Colin~HLHS Warrior

Pictures...as promised. :)

2012-01-29T20:55:00.002-06:00

Colin opening one of his Christmas presents

Colin at Kirsten's bday party

At Jenna's bday party

Jenna and her awesome Spongebob cake. :)

Kirsten, Jenna, Chase (Jenna's friend) and Taylor.

2012 Already!

2012-01-24T20:19:00.002-06:00

So I can't believe how fast time flies! I apologize for taking so long between posts. Colin is doing good, he had a cardiology visit in Dec. and his heart function is great! He still has the regurgitation his valve, but it's not to bad right now. It's normal with hypoplastic left heart. He only goes yearly now to the cardiologist, and this is a blessing! He has gotten some leg discrepancy now (one leg is a bit longer than the other) because of his scoliosis. The scoliosis is steady, no huge improvement, or worsening, so that is a good thing. He will still have to have surgery for his spine, but not just yet. We are trying to hold off as long as possible. The leg length, in combination with his stroke and CP symptoms make his limp more prominent when he walks. He doesn't know it though. It's amazing what you adapt to when you don't know any other way. He is a very happy boy most of the time, (they all have their fits, right? lol) and absolutely loves school! He's talking more and more, and everyone, including strangers can tell almost everything he is saying. Not much news, but that's always a good thing. Taylor will have surgery again on her ear, to graft the hole in her eardrum. She's already gotten a graft one time, but it blew. They are taking a graft from her lobe this time, rather than from behind her ear. That's about all the news for now. Thanks for supporting my little man. :) I promise to load some pics on here in the next few days, I have about 500 on my sd card right now. lol
Have a great night!
Millie

2011-07-28T21:42:00.002-05:00

So we all know I'm not good at updating. If you're friends with me on FB though, you probably know my life story. lol We have been doing good, there has been a lot going on in the past month, but not with Colin. He's doing good, he will have an appt. with the ortho. dr. next month. We are all ready for school here, that is, we have all the supplies, but no one is ready to go back, and I'm not ready for them to go back either. I love having them home. For the last 11 years, I've had my kids with me 24/7. Being a stay at home mom, I haven't been without my children. Never went away on vacation without them or anything. I'm gonna miss them!! With Taylor being in Kindergarten, I don't know what I'm gonna do by myself. lol
Last month, on June 10th (my dad's birthday), my Uncle passed away. He had COPD and CHF, and although he was sick, he had been doing ok so his hospitalization and death, was fairly sudden. The very next day was Colin's birthday, and I have a few pics posted of that. He had fun, he's so cute! :) I know my dad will not like that I have his picture on here, but I don't care. It's a good picture, and I love him!! Love you dad! ;) I took it of him on his birthday. This past Monday, Lee's uncle passed away, he had cancer. The funeral was today. These men were so great! It's so hard to lose them, expected or not, it has been a great loss to mine and Lee's families.
On a lighter note, here is some pics. It's my dad and Colin on their joint birthday parties, Jenna, and then Jenna, Kirsten, and Taylor at Six Flags. Enjoy!

2011-07-06T08:27:00.001-05:00

Just playing around with the webcam and picasa. :) We are all good, Colin is done with summer school and is enjoying sleeping in. Our pool is supposed to come today and hopefully be installed tomorrow or Fri. No news is good news, and I hope to post some pool pics next week. :)

Some things just suck...

2011-06-02T11:42:00.003-05:00

Hate to post just to vent, but some things just really suck!! Being a Christian, I believe everything happens for a reason, I may not know that reason, but I have to believe that. Well, sometimes that just sucks!! I will NEVER understand why the innocent suffer. I know the whole fall of Adam and Eve, whatever, people want to say...but since God can change situations, why not let the innocent live?!? If I need to be taught character, then teach ME, not through the suffering of a child. I just don't get it. I hate seeing children die from the same disease my son has! I hate seeing families grieve over their child. Don't get me wrong, I spent months and months at a time in the hospital with Colin, I've seen it all. I am very grateful for what I have. My child is living!! We don't have cancer, or are on the transplant list, my son has the most severe CHD you can have, but he is still here. He will need a transplant, but he IS here, I get all that. But that doesn't negate any of the pain that our family or other families are going through right now. Ugh! I'm so frustrated today!
Today, a 2 month old, is dying. He has been on ECMO, and has infection that won't go away, it has spread to the tubes in his chest even. He is being taken off ECMO today and his 2 brothers and parents will say goodbye today. You already know this if you are on FB, but I just have to vent today. We are losing so many lately. Again, it just sucks.

Easton: You will be whole in Heaven.

The ECMO that keeps so many babies alive. (* got the pic from google.)

All Of Me...

2011-05-31T08:48:00.008-05:00

Matt Hammitt of Sanctus Real, has written "All of Me" in honor of his son Bowen, who has HLHS. Matt and his wife have created a foundation for CHD's and all the proceeds from the sale of "All Of Me" will go to the foundation (Whole Hearts Foundation). It's on iTunes now, so go grab it, it's amazing!! :)

Ok, so for some other prayer requests today, Lucy could use some prayers. She is battling cancer, has had surgery for brain tumors.

On the homefront, things have been good, it's very HOT here right now!!! We had a storm about a week ago and a tree fell on our pool and deck. Didn't hit the pool as much as the deck, but hit it enough that it has to be replaced.

The adjuster can't come until June 13th, so we hope to have a pool by July 4th. That may be out there a little, but maybe they can get it in that soon. It stinks that the pool is the only real source of fun for the kids during the summer. We don't have $ to really go do things like Splash City, or Six Flags, so they are quite disappointed. I am too. We will be going to Six Flags in June though, my mom gets discounted tickets for VNA (visiting nurses assoc.) day.

I'm enjoying the kids being home, and they are enjoying sleeping in! :) Colin starts summer school soon. He is doing good, I think his back is hurting more, he keeps holding it. I am dreading this surgery. It's a really hard one, and I hope to put if off for a long time! Here's the kids pic at Easter.

Not a great one, but the best I could do. lol

Taylor's preschool graduation. Can't believe she will be in Kindergarten next year! I'm sure I will cry. lol Why do they have to grow up so fast?!?

I'm not good at this...

2011-04-26T18:31:00.004-05:00

So, we all know I bad at updating the blog. lol However, no news is good news when it comes to Colin. He is doing great, still eating like a champ, although he's not gaining much weight. He still has an overnight feed as well. Taylor outweighs him by 10 lbs. and she's two years younger. :) This week has been really rough in the CHD world. Heaven has gained several angels this week. It is so, so hard seeing children/babies die from the very same thing that your child has. It just sucks sometimes. People think that you don't get very attached to those you have met on the Internet, and never met in person, but that is wrong. You come to know these families, and their children, and come to love them too. Often,they are the only ones that really know what you have been through. Support is great, and we appreciate every bit of it, but support and communication from someone who knows the exact path you have traveled, can make all the difference. Someone who knows how you feel and has been at that same exact place. It is so hard to be a parent of a child with a congenital heart defect, especially one as serious as hypoplastic left heart, but it does teach you to treasure every breath, savor every moment, love every smile, embed every memory in your brain, because you don't know when you may hear that laugh again, or touch their soft skin again... So, this is for you Olivia...Fly high baby girl...

2010-12-31T08:35:00.002-06:00

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Happy New Year everyone!!
We have been doing great! Colin had his check-up with Dr. J, his cardiologist and everything look great! His O2 was 95, blood pressure, EKG, and echo were all good. We are so happy!! He has come so far and has beaten the statistics for this disease!! :) We had a wonderful Christmas, tried to get some good pics of him, but he's stubborn and won't look at you, but they're good anyway. :) Not much to post about, not much has changed,but if you all could keep my mom in your prayers, that would be greatly appreciated. She fell on the ice about a week before Christmas and broke her leg, just under the knee joint. She does not have to have surgery, but will be off work for at least another month until she goes back to the ortho. dr. She's such a trooper though and doesn't let it get her down. She has to use a walker to get up and down, but must stay seated as much as possible the dr. said. Can't think of anything else to update about, so enjoy some Christmas pics and have a safe and happy new year.

Colin opening his first present

href="http://2.bp.blogspot.com/_5vvw15atiQo/TR3rKkAYR9I/AAAAAAAAASc/UypVAtjjmHw/s1600/IMGP4981.JPG">
Kirsten, she liked this one. :)

Jenna

Bubby again

Taylor

2010-10-12T20:34:00.002-05:00

Ok, so it’s been forever since I updated. Everyone here is doing great! Colin absolutely loves school and is walking, sometimes trying to run really fast. It’s so cute! His scoliosis is worse, and he has a brace he has to wear 23 hrs a day. We are hoping for this to last him 2-4 years before back surgery. He is only 6, so he is very young for this type of surgery. Even if he does last 2-4 yrs, he will still be young for scoliosis surgery and will probably have to have another one after he is done growing. Boo on that issue. In Nov., Colin will have been walking on his own for 1 whole year!! In Dec. he will have been eating on his own for 1 whole year!! He still has a night feed, to try to get him to gain weight. He is very small for his age. Taylor is 4 now, and is taller than him and weighs 10 pounds more. Lol We are so proud of the accomplishments he has made over the last year! He knows all his colors now, and his speech is much better too. His favorite phrase is “I’m gonna kick your butt”. lol You know he has three sisters he heard that from.
Taylor goes to preschool and love it! She has a very best friend there and names all her babies after her. Too cute!! Kirsten and Jenna are doing fabulous! Both making good grades in school, I am so proud. Kirsten is in cheerleading and Jenna is signed up for basketball.
I have become a wish granter for Make-A-Wish of Illinois. I love it! I’m on my third wish, and I love these children, they are so sweet! We loved our trip so much, I wanted to give back. One of my wish kids did pass away before his wish was granted, about a week before, actually. That was so sad!

Colin has a cardiologist appt. in Dec. for his yearly check-up, send prayers and positive thoughts his way for a great check-up. I always look forward to, and dread these visits all at the same time. I dread them because I know his condition can be so fragile, but look forward to them so I can get the “all clear” from the Dr. and know that everything is ok.
I promise to update again after his appt. I won’t wait this long again. Thanks for the prayers!!!
Millie

Here's my little man!

When his hair was buzzed. Glad it's grown back out now. lol Showing his back brace.

The last two are from June on his b-day

2010-03-15T20:55:00.002-05:00

Haven't updated in a while. Lee's uncle Harold entered Heaven. Very, very sad, but we know that he isn't in pain anymore. Colin has been good, he is eating like a champ and walking like crazy! Great news! He is still on meds for a sinus infection and ear infection, but he fever has finally passed and he is back in school and happy. He is no longer using his wheelchair in school, so we have a harness for him and they strap that to the bus and put him in a booster. This means no more wheelchair on the bus, and it's much easier for me to get him inside now. :) That is such a blessing. That wheelchair was SO heavy and hard for me to get inside. The girls are doing great, Taylor had a field trip to see Disney On Ice last Friday and it was so fun! Not much going on around here, and that is a good thing! Thanks for checking on Colin and for all the prayers and support. Have a wonderful week! We are looking forward to Spring. :)
Millie

2010-01-24T18:19:00.001-06:00

Well, Colins appt. didn't go as smoothly as we had hoped, but there is good news too. His scoliosis has worsened considerable, his curve is now at 38 degrees, the good news though is that when you pick him up under his arms and hold him with his feet off the ground, (sort of a test) then his curve straightens out some. So, it IS flexible. That is a GOOD thing! We go back in four months and will talk about possibly bracing him. We did this before, but are hoping that it will work better this time since his profusion is better and his O2 is higher. Before, he didn't tolerate it and was very "huffy and puffy" and had a hard time catching his breath. They said it had to be that tight though, in order for it to straighten out his spine. He really doesn't want to do surgery on Colin, they don't normally do that on someone so young, but he said he will if he has to. The severity of it can create pressure on his heart and lungs, he said that is not likely in Colin's case though because his curve is mainly down low, but it will shift the intestines around and other organs around and can cause problems with digestion, ect..
So, not all bad news, but not that great either. I can always be much worse, and I am thankful that Colin is doing so good heart-wise and eating like a champ! Thank God for that!!

In other news, please continue to keep Lee's Uncle H. in your prayers. I haven't talked to his Aunt to have permission to give his name yet, but that doesn't matter, if you pray for Uncle H., then God knows. :)
The latest report is that he is end stage 4 lung cancer. He has a large mass pressing against his spine and they will do an MRI to see if it can be radiated, so he will not have some paralization from that. They will start chemo next week. Thanks so much for you prayers for this family. They have so much going on right now, trying to help take care of Aunt R.'s dad who is not doing well, raising grandchildren, one of which is about to have a baby (yeah, my baby fix lol) and now this diagnosis. They need prayers.

Have a good night,
Millie

2010-01-13T18:52:00.003-06:00

Sorry I didn't update sooner. Taylor did great and is running around like nothing happened! :) She had lots of fluid behind her ears and they said her adenoids were big, so hopefully the can drain properly now and she won't have many ear infections. Her hearing should improve too. Thanks for all the prayers. I always get myself so nervous, I should be used to it, but after all Colin's surgeries and hearing the risks over and over, I still get paranoid. lol Colin is doing great on his eating and didn't lose any weight, I think he gained a little, but he had his shoes on so we didn't get an accurate weight like we usually do. I'm so proud of him!
Hope everyone has a great night!
Millie

2010-01-10T12:55:00.000-06:00

Taylor goes in at 10:45 tomorrow for her surgery. She will be having her 2nd set of tubes in her ears and her adenoids removed. I'm getting nervous, I should be used to this by now, but every time they have to go under anesthesia, it worries me. Anyway, please be praying that everything will go smooth and she will have a smooth recovery.

Lee's uncle will not be getting any results on Tues. He will have a PET scan on Fri. and then go over the results and decide on a treatment plan then. Please continue to keep him and the family in your prayers as well.

I'll update when we get home tomorrow.
Have a good day,
Millie

Prayer request..

2010-01-07T18:57:00.001-06:00

Please pray for Lee's uncle. He was diagnosed with lung cancer.
He has a large mass in one lung and several small masses in the
other, with lymph nodes being included as well. They have a dr.'s
appt. Tues and will know more then. Please keep their family in
your prayers! I don't know if his Aunt will be setting up a page or
not, but if she does I'll pass the info. along.

Thanks so much, I'll post more as I know more.

Have a great evening,

Millie

Happy New Year!!!

2009-12-31T22:06:00.000-06:00

Happy New Year everyone!! We are just hanging out as a family with my neices over and my brother and girlfriend over a little later. Having fun playing the Wii and the kids are looking forward to staying up all night.

Colin had a card. visit on Tues. and had an echo and chest x-ray and everything was great!!! We are now, for the first time, we are only going to the card one time a year! Exciting, but also nervewracking. Colin showed his dr. he can walk for the very first time! Dr. J. was SO excited to see him walking!! We came up with a plan to try to get Colin off of the feeding tube also. So far, he is only having 500 (instead of 1200mls) of his formula. We are giving him 500 overnight and seeing what he will eat during the day. He is eating pretty good (for just starting out) but not drinking much at all, and what he is drinking, is empty calories like soda! I don't let the kids have soda usually, but since that's all he will drink, we are letting him. The card. said that it really shouldn't matter what he is drinking as far as nutricional (sp?) value as long as he is eating, he should get his vitamins/minerals from his food. We do have an appt. with the ortho. dr. in Jan. That will be our next big hurdle aside from eating. I am hoping and praying that he will not require surgery for his spine for a long while. We will find out on Jan. 20th. Taylor will have surgery to get her 2nd set of tubes in her ears on the 11th, and they will also take out her adenoids too.
Colin had a virus or something as had high fevers on Mon. but he is fine now.

Thank you everyone who supports our family and prays for Colin. You are the reason we are able to make it through this HLHS journey. So many have not made it. Just a few weeks ago, there were 3 babies/children that went to Heaven, all with in a week and a half of each other. It's so heartbreaking. Please keep these families in your prayers as they start the new year without their families being whole. We are so thankful for Colin, sometimes it is very frustrating and I continue to ask "why" (especially when he is in pain), but he is SO worth it, and brings us SO much joy!! We are going into this new year with many thanks to God and to you for your support.
Have a wonderful night and be safe!!
Millie

Happy New Year Glitter Pictures

2009-12-12T20:40:00.000-06:00

I'm not good at keeping this updated anymore, but that just means life is getting back to normal, our normal anyway. :)
Colin is doing great still, he has a cardiologist appt. the end of this month, so I'm anxious to see what the Dr. will say then. We have to discontinue his Lasix on the 15th, in preperation for the appt, so I'm hoping he will do o.k. with that. Any other time we tried going without the Lasix, he was very puffy a day or two after and was retaining fluid, so I'm hoping he will come off of it with no problem this time. He's only on it three days a week, but it seems like he needs that extra diaretic to pull the fluid off. The most amazing news is that COLIN IS WALKING!!!! Yes, you read right, he is walking!!!! We are SO proud of him, in my last update, he was doing great with his walker, and cruising around the furniture, but now he is walking on his own, and can walk around quite a while before falling, or having to stop. He had a pretty bad fall at school, and I was NOT happy! Even after 9 days, he still had quite a big bump on his head that was very slow to go away. The next day, the PT at his school gave him a helmet, and then I made an appt. for him to be measured for one and got him one of his own that fits him better. He wears that at school now, and I know he is protected. He is saying more and more, lots more phrases and even things he picks up from his sisters that he should not say, like "stupid". lol Our next big hurdle for Colin will be his scoliosis. It is getting worse, according to the last x-ray, so now we have to make another appt. with his orthopedist to see where we go from here. Hopefully we can wait it out a while longer, and it won't compromise his heart or lungs, before any surgery is needed. So, if you want any specific things to pray for, that would be one, and of course that his heart continues to do well.

It's freezing cold here, but no snow yet, so the kids are ready for a snow day. :) Kirsten and Jenna are doing great, Taylor is good too, but did have 2 E.R. trips in one day (all while Lee was out of town) to remove a bead she shoved up her nose. lol Funny now, but not so funny while they were trying to remove it. :( Taylor and Jenna had a follow up appt. with the ENT because they are getting frequent ear infections again, and the verdict was to leave Jenna alone and not put tubes in her ears again (she had them around a year old), but Taylor has a lot of fluid in her ears, and has a pretty significant hearing loss because of that, so she will have to have her tubes inserted again. She will have surgery on Jan. 11th, and will also have her adenoids taken out. She talks pretty good, but does say "d" for "g" and "t" for "k and c", things like that, so hopefully after she gets her second set of tubes, her speech will clear up too.

We are enjoying the Christmas season, watching all the Christmas shows and movies, and have our tree up and our lights outside. Colin loves to see the Christmas lights in our neighborhood and around town, and we all yell "Christmas lights" and the kids say "oooh ahh". It's so funny and Colin joins in. So cute!! I'll try to get some pics up soon of Kirsten's and Jenna's and Lee's birthday.
Have a wonderful night!!
Millie

WOW! It's been a while!

2009-10-12T18:40:00.004-05:00

O.k. Sorry it's been so long. We've been busy...with life! LOL Colin made a full recovery from his cath and is doing wonderful!! His O2 ranges from 94-96 and he is much pinker! He is doing so great and progressing with walking and can cruise along the furniture and banister on the stairs. We are so pleased with his progress. Taylor is doing great in pre-school and loves going. She was very shy the first day but loved it and now has no problem at all with me leaving. We are going on a field trip on Fri.to the pumpkin farm. Kirsten and Jenna are doing great as well, both doing well in school and will be starting up basketball again soon. I am volunteering at Kirstens school two days a week for a few hours each day and love it! I've been wanting to do it since she started going there but wasn't able to. Now that Colin is in school all day I am able to do that and Taylor comes with me after she gets out of pre-school. She loves being around the "big kids" too and has fun playing with them.
Colin will go to the cardiologist in Dec. for a final check-up and then he will only have to go once a year. I can't believe we've made it to once a year check-ups! It's been long five years in one way, trying to take it day by day, hour by hour, an sometimes minute by minute with all the hospitalizations and surgeries, but then in another way, it has really flown by and I can't believe he is in Kindergarten! His class is called a "life skills" class, he has a student with Downs Syndrome in his class, so it's all special needs kids. The class is very small (4 or 5 kids I think) and they have a teacher and an assistant in the class so it's very one on one, which I like. The nurse is very nice and has experience with feeding pumps so I am very happy about that also. Colin is also saying more and more. He is such a joy!

Not much else going on around here, no news is good news. Here are some pics of the girls at a fall festival. Colin stayed home with Grandma since I was by myself, I didn't think I could handle everyone and a wheelchair, feeding pump, ect. alone. Anyway, enjoy! Oh, and please pray for us during this flu season. This H1N1 stuff could be very, very bad for Colin. Please pray for God to protect him and us from these nasty virus'.
Thanks so much!
Millie

Taylor in the bounce house

Kirsten didn't ride the horse at this festival, so I threw in a pic of her riding the horse in Sept. at the Italian Fest (a local street festival).

Jenna

Taylor again :)

2009-07-16T15:46:00.001-05:00

Colin has been in the room since about two o'clock this afternoon. It was REALLY bad for a while, but then he finally setteled down after the nurses left him alone and we put a Dora video on. The Dr. ordered him some Chloral if he needs it, but so far he has not. I'm really impressed with that! He usually never settels down by himself, but the prayers have been working and when I left his room, he was snuggled in the bed with his dad and watching t.v. He did have to have another colleratal coiled that was bringing blue blood straight into his heart, if they left it, it would've made him bluer so they went ahead and coiled it. He also has a coil in his vein that they used to go through the liver with. Going through the liver has increased chances of bleeding so they had to coil it. His O2 is running at 97-100 and it's unbelieveable! His lips are already pinker and Dr. J. says over time he will get even pinker! His hemaglobin was high, because of his low O2 sats, so once his sats stay higher for a while, the hemaglobin level will drop and he will appear pinker. Hope that makes sense. It's kind of hard to think right now on about 2 hrs. sleep. Main thing is he is doing wonderful and calm with out any drugs!!! Thank you so much for the prayers. We love you guys!
Millie

Oh yeah, he will have an x-ray tomorrow and something else I can't remember and then we should be able to go home if everything looks good.

2009-07-16T13:10:00.001-05:00

Got a call saying they were almost done! It turns out, in true Colin style, that things were a bit more complicated than they thought. They tried to go through his neck, in his IJ (internal juggular) and it too is blocked. It wasn't blocked in his pre-fontan cath so it must have become blocked from an I.V. or something with his second Fontan surgery last June. Because of this, they had no choice but to go through his liver. I'm not sure if they cut his stomach to do this or what, I don't know much about that, but the liver has lots of veins so they use one of those. They got to the fenestration and blocked it, waited about five minutes and checked to see if his venus pressures changed, and they didn't so they were able to close the fenestration. Last word was the fenestration was closed and he was doing well and satting at 99%!!! I don't think they will stay this high, but we'll take it for now! I can't wait to see him pink! I love pink lips!! :)

As for the IJ being blocked, this is how he gets O2 to his lungs, so his body has created collateral vessels that have went around the blockage and allowed blood flow to his lungs. Amazing how the body works! Please pray for his comfort and for him to be at peace and have no anxiety when he comes back. This is the worst time for him, he is so scared by everything!

I'll update more when I can.
Millie

2009-07-16T09:34:00.000-05:00

They took Colin down about 1/2 an hour ago. He was not happy, but not screaming like he usuall does either. There has been one drawback to this already stressful cath, since he does not have acsess in his groin areas, they cannot close the fenestration by going only through the neck. They will have to go through his liver also. There is more risk doing it that way, especially with bleeding, but they said they do it often, so it's not an enormous deal either. The cardiologist said they will balloon the "hole" and leave it there for about five minutes, and watch his venus pressures to make sure they don't go up, and then if they stay down, they will go ahead and close the fenestration (hole). Pray it will go smoothly and his pressures will be where they need to be. That's about all I know now, but will update when they call me. Thanks so much! Love you prayer warriors!
Millie

2009-07-15T18:39:00.001-05:00

Colin is first case tomorrow! The first case tomorrow that was scheduled thought their appt. was Fri. and can't do it, so the nurse said it was like "fate" that Colin go on Thrus. So, I'll update during the day, we will probably go back around 8:30, so about 1/2 to 1 hr. later than that with hospital time. Thanks for the support.
Millie

2009-07-14T16:26:00.001-05:00

So I am frustrated beyone belief right now!! I had to call myself, again, and see when we were supposed to be at the hospital tomorrow for Colin's cardiac cath, and they tell me it is cancelled once again! This is the third time they have cancelled on me! I'm so ticked!!! They are doing a hybrid procedure on a baby now (since when does Glennon do the hybirds anyway on HLHS babies) and have cancelled everyone! This always happens to us! If I get myself emotionally prepared for another surgery date and have it cancelled, I'm gonna explode!

I asked them if there were ANY way to get him in this week since my mom has taken vacation days to watch my other kids (which she has to ask for a month ahead of time) and they MAY be able to get him in on Thurs. A baby scheduled for Thurs. has a fever so they might not be doing him/her. I hope they can get him in then. I can't even say more, I'm so upset right now!

2009-07-08T18:35:00.002-05:00

I've been neglecting to post, sorry. Kirsten is in lots of pain today, he was actually better yesterday than today. Her surgery went fine, the Dr. said that she had REALLY big tonsills and anenoids, which makes for a worse recovery. Today she has not said one word, because it hurts too much to talk. We are giving her vicoden for pain, but she seems to be like her brother when it comes to pain meds and they don't really affect her. Before they took her back to surgery, they gave her some Versed (really strong) to relax her and it did nothing! She was as alert as she could be and if did not affect her at all! I couldn't believe it! When Jenna had her dental surgery, they gave her some and she was flying high, laughing and cracking up, it as so funny! Kirsten definetely did not have the same experience with that drug. Please pray for her comfort, and for her to want to drink and keep her fluids up. She is supposed to have a cup of fluids every hour! That's a lot, especially when your throat hurts. They don't want her throat drying out and breaking the scabs back there and start bleeding. She can't blow her nose either, or her adenoids (where they used to be) might start to bleed.

All that being said, Colin really is my hero. I don't know how he does it. My kids are pretty tough and don't really complain about anything, and this has got her down, so I have no idea how Colin can have 8 major surgeies (4 open-heart) and do as well as he does. What a strong man I have! Thank God for that!

Thank you everyone for the prayers, we really appreciate them!
God bless and have a wonderful week,
Millie

Happy 4th and other news

2009-07-03T21:58:00.005-05:00

So Kirsten goes in on Mon. her tonsils and adenoids removal surgery. I'm very irritated at the hospital (Glennon) for not calling me and telling me a time to be there. I called today and of course, every dept. is closed. They were supposed to call me yesterday, but didn't and I would have called them (not my responsibility) but I didn't even think about today being a "holiday" and the offices being closed. I even tried the social workers and the admitting dept. to see if it was in the computer, but the social workers were not there either and admitting was not "allowed" to have acsess and tell me what time. How frustrating! So now I have to call at 6am on Mon. to see what time I have to be there with her. I guess I'll just have her go NPO after midnight. I'll be glad to get it over with. Please pray for her, she is really scared and is not good with pain at all! Pray for a quick recovery and minimal pain.

In other news, last weekend we had our 4th of July party since my mom has to work on the 4th this year. Pictures to follow. We had a good time. We will go to see the fireworks this year, like we always do. I go to the Dollar Store and get some glow sticks/necklaces for the kids. This year they had some that you made into a ball and some that made into a hat, so we have all kinds of glow sticks. They love them! They always sell them for 2 bucks a piece, but one year I got smart and got the same ones from the Dollar Store, so I save money that way. There are actually 2 necklaces in a pack so I really saved. :)

Not much else going on around here. Colin is still on for the 15th for his cardiac cath, and I'm looking forward to the end result, hopefully his legs will not be so purple and his endurance will go up. We also got some pics for his b-day and Taylors b-day I'll post. I know those were a little late, but better late than never, I guess. :)

Hope everyone has a great 4th of July!! Thank all the soldiers and veterans (my dad too) for our freedom!

Here's some pics:

Kirsten

Jenna

Colin

My niece Katie and Colin

Taylor

Taylors birthday pic

Colins birthday pic

Today is the day!!

2009-06-11T21:30:00.003-05:00

Well, I know that I already blogged about Colin's birthday, but that was just the party! :)
Today is the official day! Five years ago today, Colin was born! I got to see him for about 30 seconds, and then he was off to the NICU to be looked at and then transferred to the childrens hospital. I got a pass that night to go see him, and the next day, I was discharged early, less than 24 hrs., so go see my little man. He was so cute, with big, chubby cheeks, and for seven days, I got to hold and love on him, his body with only a nasal canula and an umbilical line. No scars to trace, and no pain, so far, for him. What a glorious seven days they were! He's been through so much and I'm so glad I have him. He is my hero.
Enjoy your weekend,
Millie

Happy birthday buddy!

Happy Birthday to my little man!!

2009-06-06T17:38:00.003-05:00

Today we celebrated Colin 's 5th birthday! His actual b-day is not until the 11th, but we celebrated it today. I can't believe he is 5! In a way it seems like it flew by, but in other ways, it has lasted forever. When we were first diagnosed with his condition, we were given the statistics that only half of the babies with HLHS survived until age 5. WOW! What a blow we were given! We didn't expect anything to be wrong, just going in for a level 2 ultrasound because he was very active and they couldn't see the heart as much as they liked. We had our (then) two girls with us and were going to go to the zoo afterwards. After a minute, we had a very packed room, full of Dr.'s and nurses looking at the ultrasound and saying nothing. Answering none of my questions. Then we spoke to the genetic counselor and were given the diagnosis. The outcome would be very bad, in their words. Half the info. we were given was very outdated and we left with little hope that our son would survive. I had an amnio that same day, and we would soon find out that he was, indeed, a boy, and that he had no other genetic abnormalities. Still, we were offered abortion, at 24 weeks, and of course turned that down, it was out of the question for us.

I am grateful for every day we have with him, so glad that he has made it to this milestone, beating the statistics, a miracle from God. At the same time I say that, my heart is broken for all those who have not made it. It is so amazing how close you get to families and their children who are all suffering from the same heart conditions, all traveling the same road, knowing how each other feel. The hardest thing I have ever had to do was hand him over at the O.R. doors. Stand and cry, praying I would see him alive again. Thank you God f0r allowing us to see him each day, smell his hair, and hear him laugh. For forgiving me when I'm angry and wondering "why", why do innocent babies have to suffer, why do parents have to bury their child. Thank you for forgiving me when I doubt and always catching me when I fall. Without You, I couldn't have made it through this last five years.

The party was great, it ended up being at my mom and dads house, which is just downstairs. :)
Colin loved it when we sang happy birthday, and he even tried to blow out the candles, but ended up having his sisters blow them out for him. Don't mind the pink candles, it's all we had. LOL

These are before the party.

He loved us singing to him!

He even ate some cake!

Can you tell he's not used to eating all the time?!? :)

I love this one of him feeding his daddy!!

After that he was able to get out of his wheelchair for a while and scoot on the floor to play with some of his new toys.

Here he is looking out the window to the patio where all the other kids were swinging on the bench swing outside.

Playing with his Spongebob toy car. Don't pay attention to the drywall mud in the picture. LOL Mama and papa are doing some remodeling. :)

Playing with his new piano, he loves music!

Thank you for you thoughts and prayers for Colin. We appreciate every one of them! We are so blessed to have prayer warriors (or wolverines, as THIS MckMama says)out there praying for Colin. Hope you enjoyed the pics of his birthday. Have a great weekend.
Millie

Pray!!!

2009-06-04T20:04:00.002-05:00

Pray for Lindsay (click on her name to go to her page)!! She has/had HLHS and is receiving a new heart tonight!! The lastest was that she will go in late this evening for surgery. Please pray for a smooth surgery and recovery with no rejection! Also, Thomas just received a new heart a few days ago and could use some prayers too. Click on his name and enter his carepage name: ThomasEarl.
Thanks,
Millie

First day of summer school and some pics

2009-06-03T15:58:00.007-05:00

So today was the first day of summer school for Colin. He did good, I called the nurse today to make sure she gave Colin his 11:00 meds and hooked him up to his tube feeding, and all was fine. He goes from 8-12 during the summer, but he is the first one picked up on the bus, so they get him bright and early at 7 a.m. Early for this household. Everything is going pretty well, Colin is still very gaggy, we are running his feeds over two hours still.

We had a good weekend, spent a lot of time in the pool. I got a bad sunburn and am still reeling the effects, but it was still fun. Pics to follow. Really not much news around here, which is a good thing. Oh, Jenna has to have tubes in her ears again, so it looks like we will have a busy summer. Colin's cath, Kirsten's tonsilectomy, and Jenna's tubes, but overall, that's not too much drama, nothing to serious, or as serious as it could be, so we are good with that. :)

I have to give my brother props (even though he doesn't read this blog). He graduated in May with his degree in heating and cooling, and he found out he has a job already! We are SO proud of him. He stuck with it and completed his schooling, even though he was working already (an apprenticeship), taking care of his kids, and attending school. Way to go Brian!

Don't forget to please pray for THIS family, they have endured six miscarraiges, have adopted an awesome little boy from Russia. Last year they were adopting and spent three glorious days with a little girl, only for the mom to change her mind. They are now in the process of adopting a little boy through a private adoption. Please pray that the adoption will go through smoothly and the birth mom will have peace with her decision.

Now for some pics:

Couldn't get him to smile, he was "in a mood"! :)

Kirsten holding up a rock she found in the pool :)

Taylor

All three of my girls

Jenna swimming

Planting...

2009-05-14T20:48:00.003-05:00

That's just some of what we did this weekend. You all know how much of a picture freak I am, so I had to take some pics of our planting flowers.

But first, a little change on the ~~crazy house with four screaming kiddos~~ homefront today. Got a call from cardiology today, and Colin now has a third, and hopefully final date for his post Fontan cath to close his fenestration. It is now July 15th. Not such a good time since Kirsten will be getting her tonsils out on the 6th of July, and will probably still be in pain recovering from that. Since she is older, the Dr. said she will probably have a harder time recovering. He said they usually do the surgery at about age 4-5. He said recovery will be about two weeks, so I'm not looking forward to staying in the hospital with Colin and having her be at home not feeling well. I know she will be in good hands with my mom and Lee, but a mom likes to be home as well when the kids are not feeling good. I do anyway, I'm a nurturer. I'll just be praying she is feeling well by the time Colin has to go in. Who knows, they might change the date yet again, but I hope not. I hate it when they keep changing things!

Kirsten's last day of school is tomorrow and she is very excited, and Jenna has a field trip and her daddy is going with her, wich makes her very excited as well.

PLEASE keep praying for Kayleigh's family. She went to Heaven a few days ago. She has finally made her journey home, only not the home her parents had hoped for. R.I.P. Kayleigh, you will never be forgotten!

I better get these kids to bed now. Have a wonderful weekend!

2009-05-08T22:05:00.002-05:00

First off, I want to say a big thank you to all who prayed for me and my surgery. Everything went fine, I was a worry wort for nothing, like always, but that's just me, I worry about everything. My cyst was remvoed, as well as some skin tags I had on my neck. The cyst was sent to pathology, she told my hubby it didn't look like a "regular" cyst, so I'm hoping that wasn't bad news, and praying still that it isn't cancerous. Wondering why it doesn't look "normal" and what that means.

Went to the Dr. today with the kids and Colin has a sinus infection. No fever, but is that a surprise to anyone? **sense the sarcasm**. His Reglan is being DC'd (discontinued). It's not helping with the gagging anyway, and can have lots of neurological side affects. We have to see G.I. at Glennon for a follow-up to see what else we can do for him and his gagginess. It will probably be a few months before we get in, they are usually pretty booked. Other than that, Colin is doing well, thank God. Kirsten and Taylor both got looked at too, per my request. They have both had very nasty coughs. Kirsten has a history with wheezing, so she was given an inhaler and Claritin, and Taylor was given Claritin too, hopefully that will take care of both of their coughs. They are pretty bad at night especially.

Kirsten had a program at school today and she did so good! She got her results from her S.A.T.'s today, and I am SO proud of her. In Spelling, she was PHS (Past High School), I couldn't believe it!! She is only 9 and in the 3rd grade! She was at or above grade level in the other areas too. We are so proud of her! She is growing up so fast, and is starting to have the self esteem issues that most girls have. Any info. to help that is appreciated. I try, but don't know the best things to do in that area, since I still struggle with it. I don't EVER remember feeling good about my appearence, so I'm not sure how to approach it. I tell her she is beautful all the time, created by God and just the way she should be, but I know it's different coming from "mom" than from someone else.

Jenna is doing good as well, she is so good one min. and bouncing off the walls the next. Her meds are helping her at school though, and that's what counts. She is losing weight though, and I'm making her drink a pediasure every day. She is doing excellent in school too, I know she feels she is behind, and she is, for the regular class, but for her special ed subjects, she is right on target and ahead. We are so very proud of the progress she has made as well. I probably already said it, but she got 100% on her 100 sight words that she had to learn this year. She has such a loving heart and is so attached to all of her teachers, she misses them when she is not in school. I know they love her too. :)

That about covers it for now. Have a wonderful weekend,
Millie

Tomorrow, Tomorrow...

2009-05-06T17:44:00.002-05:00

Tomorrow, tomorrow, I ~~love~~ don't like you tomorrow! Although Taylor likes singing that song, I'm not liking tomorrow! Tomorrow I will go in for surgery on my eye. Please be praying that everything will go o.k. and the cyst will NOT be cancerous. The chances are low, but so were the chances to have a child with a very serious heart defect, so I don't put much stock in "chances". I'm so nervous!

Mr. Colin got his new wheelchair yesterday! It looks and feels so much more comfortable for him, and actually has working brakes! LOL
He's doing good, besides the continual gagging we've been dealing with, and he has a cough right now, but he handles everything like such a trooper!

Kirsten's last week of school is next week, so it's getting close and we are all excited. Colin gets out May 20th and Jenna goes till the end of May. The kids are excited to get the pool open and swim. It will be our first full summer in this house so they will probably be out there every day swimming. It will be a fun summer, and maybe I'll get a tan on my pasty white legs this year! LOL

I'll get some pics up this weekend of Colin's wheelchair. Hopefully I'll be feeling pretty good with my eye, that I can be lazy and get some photo organizing done and post some pics. I'll have my beautiful eye patch on so I'll look so great while organizing! Maybe I'll decorate it like those "pimp my swine flu mask" people did! :) Check the pimped out masks by CLICKING HERE. So funny!

Remember to pray for:

and

Enough for now, have a good week.

Stomach issues

2009-04-29T16:05:00.003-05:00

From day one, Colin has always had stomach issues. From reflux, to digesting food (formula) VERY slowly. Before his Fontan, when more meds were added, he was on five meds, and only two of them were for his heart. That is amazing in a way, knowing and praising God that his heart function is doing well, but also very disappointing, that he always has these stomach problems. They are harder to deal with than the heart problems at this point. Poor Colin is still very gaggy, his feeds are running over two hours, then a long continuous one overnight, and he still struggles. I feel so bad for him, and so angry that he has this to deal with along with everything else he has endured over the last 4 1/2 years. Please continue to pray for his belly. He will go to the Dr. on May 8th, and hopefully some tests will be scheduled to find out if his Fundo./Nissen has come unwrapped again. He's not bringing up his formula, so I don't think that it's unwrapped, but something is definitely wrong to cause him to gag so much. He's maxed out on the dosages he can have to help him, so I'm not sure what else can be done.

In other news, we had an exciting weekend here, Kirsten woke up at 4am Sun. morning with throwing up and a fever of 104.5! Now, if anyone knows the Mordis kids, they know that usually you are on your death bed before running 100.0 fever! My kids NEVER run fevers, so I was really scared about this one. I do have to give myself credit, in that I am pretty good at hiding my fears and emotions in front of the kids so they don't get scared. We ended up at Glennon's E.R. and she has strep throat again. Don't know why she ran such a high fever this time, but she has now had strep throat in Dec, Jan, March and April. She had her appt. with the ENT on Tues. but the soonest they could schedule her for surgery was July 6th. They did put us in line to call if someone had to cancel. Looks like we will have a busy few months. My surgery is on May 7th, Colin's cath on June 3rd, then Kirsten on July 6th. I'll just be glad when it's all over with.

It's finally official, Colin will get his wheelchair delivered on May 4th. I'm SO happy! I can't wait for him to get it! The "demo" one they fitted him in looked like it had more padding and was more comfortable for him to sit in. I'll post pics when it's delivered.

Stellan is finally home, thank God, and Kayleigh could use lots of prayers if you want to pop over to her page. Things are not looking good for her. Just click on their names and it will take you to their site.
Have a wonderful week, and please don't pay attention to the ugly white box that used to have my signature on it. I can't figure out how to get it off, I've had lots of suggestions, but nothing works. :)

2009-04-26T08:09:00.001-05:00

Kirsten has strep throat. She never runs fevers so this very high fever really scared me! Thank God it wasn't worse!

2009-04-26T05:11:00.001-05:00

At the E.R. With Kirsten. She has a fever of 104.5 and she NEVER runs fevers. Please pray for her!

2009-04-23T18:50:00.003-05:00

Please pray for THIS precious family. Their second child died of SIDS, and they found out they were expecting again, and just had a miscarriage. Please pray for them.

2009-04-23T13:12:00.001-05:00

Colins wheelchair is in!! Now they have to put it together and then call me to schedule a delivery time. Shouldn't be much longer now! Yipee!

I.E.P. and my eye

2009-04-22T18:14:00.003-05:00

So today we had Colin's I.E.P. again. We settled on keeping him at his current school but sending him all day. I think he will greatly benefit from all day school, he loves it and will give him a chance to learn more too. It's not the A.R.C. that I had planned to send him to, but I was only going that route because when he first started school two years ago, they said they did not tube feed or give meds. I can't remember who told me that, but they said today that they will indeed be able to give him his meds and tube feeds. He will still get the same amount of PT, OT and Speech as before as written in the I.E.P. but he will actually have more PT because the teachers will be working with him in class too, not just when the therapist is there. Hope that makes sense. I keep getting distracted with the kids and loose my thoughts. :)

Colin is still VERY gaggy, and I'm hoping and praying that his Fundo. is still intact. He won't walk anymore, I don't know why, but he is scared to take steps now.

As for myself, I went to the plastic surgeon today. I've been having problems for about two years now with a cyst on my eyelid. I've had five steriod shots in all and it always goes down, then comes back. They can't do the steriod shots anymore, it's not working, and too many of them can be harmful. So, I will have surgery on May 7th. I'm so nervous! Those of you who know me know that I'm overweight (to say the least), and now I'm having these arrythmia's (from the atria) and on heart medicine for that. Those two combined with anesthesia makes me very fearful. Then there is the fact that it MAY be cancer. The odds are that it is not, and I'm not as concerned about that, but I don't take comfort in statistics since Colin's defect is so rare and yet he has it. It's a pretty big cyst, so the Dr. said if she has to take too much tissue, then she will have to take a piece of skin from behind my ear and create a skin graft on my eyelid. The BEST part (can you feel the sarcasm?) is that I get to wear an eye patch for a week! I'll be a pirate. Kirsten's spring production at school is the day after, so I'll be there with a lovely patch! How embarassing! So anyway, please pray that everything will go smoothly, and for Colin's belly issues.

Continue to pray for Stellan to, he's still in the hospital. He had an ablation yesterday. Sheperd could also use your prayers too. He's has a trach now and needs some prayers.

My own heart..

2009-04-15T19:41:00.002-05:00

I got the results from my holter monitor back today and I have atrial tachycardia. Not real sure what this means yet. I 'googled' it and it sounds like there are four different types. I don't know which one I have, I'm going to ask at my appt. on the 30th. From what I read, it sounds like it originates in the atrium and my heart is taking the wrong electrical pathway, like a misfire or something. My heartrate has been fast for some time now (like 7 yrs.) but now is palpitating. I was put on a new med Flecianide in addition to the Metaprolol I have been taking. Both are very low doses so I hope they work. The Metaprolol alone has not worked. I just took my first dose so I guess we'll see. Now, I'm begining to wonder if me having these heart problems has anything to do with Colins. CHD can be genetic, no one in our family has ever had heart problems besides adult onset, due to obesity, or diabetes, but this is something electrical wrong, so, did I always have something wrong that I passed on to him, or causing greater odds for my children to have a heart defect? Always a question on my mind is wondering if I could do something different so Colin wouldn't have had this wrong with him. I was so OCD that I never even drink a soda, had tylenol while pregnant, always took prenatal vitamins. I don't know what else to say about it, just venting my feelings here. :)
I'm gonna go relax in the hot tub with Taylor.
God bless.

2009-04-14T17:12:00.001-05:00

Just seeing if the mobile blogger posts work! :)

2009-04-13T17:52:00.001-05:00

Please pray for Sheperd. You can find his blog by clicking of his button on the right side of the page. He needs immediate prayers to avoid a trach. Storm the Heavens.

Lets try again...

2009-04-13T15:43:00.004-05:00

So the other day I tried to post some photos and they were all chopped in half, so I kept trying different sizes and they were still chopped, so hopefully they will work now. If not, then please enjoy the chopped photos. :) LOL
Colin is still awaiting his wheelchair, they did call me today and tell me that the computer glitch that seemed to mess everything up has now been fixed and will be shipped by Friday at the latest. So, they should have it by early next week, then the vendor will come out and deliver it and show us exactly how to use it, ect.. I can't wait! He is really gaggy still, even after switching back to the formula, so I'm praying it will ease, but fear that his Fundo. has come undone again. This happened in '06-'07 and in Jan. '07 he had to have a repair surgerey to re-do the Fundo. Other than that, he is doing very good. We had a wonderful Easter weekend, and visited w/some family from MO. This is the last day of Spring break for Colin and Jenna so they will be back to the routine tomorrow. Kirsten had school today, but had an earache so she stayed home. In case I forgot to mention, her appt. with the ENT is on the 28th, then we will schedule surgery at that visit. She has to have her tonsils taken out, too many bouts with strep throat.
Colin is doing wonderful with his walking, he can take about 5 steps at a time now. He's very wobbly, but I know he'll get it soon. His stomach issues really hold him back, if he could eat faster, or have less feeds, he could be on the floor more practicing. He can't have any jarring or scooting around on the floor for about an hour after each feeding, or he gets gaggy, and his feedings average about 1 1/2 hrs. now since we have had to slow them down because of the gagging. I didn't mean to write this much, so enjoy the pics. Oh, Colin has a button now thanks to Melissa over on THIS website!! You should be able to copy and paste the code below Colin's button for your blog if you want one. :)
God bless,

At the zoo:

my favorite of the big girls together

Taylors name at the penguin exhibit

Because they are pretty. :)

Now Taylor's 3rd b-day:

Help with pictures...

2009-04-10T20:43:00.000-05:00

I need help with pictures. When I try to post them, half the pics are cut off. I was trying to post some from the zoo and Taylors b-day party but they keep getting cut off. I tried re-sizing them but it doesn't work. PLEASE help, I need blogger for dummies! LOL. I really wanted to post those pics. :(

I.E.P.

2009-04-06T18:41:00.004-05:00

So we finally got another I.E.P. scheduled for Colin. It's on the 22nd of this month. Please pray for things to go well. I'm not looking forward to this one, since I am not in agreement with the school this time. I really believe that Colin will benefit greatly by going to the all day school. He is taking some steps now and I can't wait until he has even more therapy to see how far he will go. His cath has been moved up to June 3rd. His Dr. is on vacation on June 30th, the original date. I'm not upset about that though, I just want to get it over with, and see some pink lips on my little guy! :) I pray he has more endurance after that also.

In other news, we got a bunny yesterday. We had one before, but he died a few months ago. It was very sad for the girls, so we figured for Easter, we would get thim another one. They love it, and his name is "Bugsy", like the guinea pig on the movie "Bedtime Story". We are very original with names around here, as you can tell. :)
Colin is featured on this blog. There are others on there as well who need prayer. Stop by and start prayin'. :)

steps

2009-04-02T20:10:00.000-05:00

Colin took three steps tonight!! He was very wobbly but did it all by himself. We are SO very proud of him! He doesn't have much time to practice since his feedings and his nap, but it is a wonderful start! He was so happy with himself too, laughing and smiling the whole time. Just thought I'd share the gret news.

Here goes..

2009-03-30T10:19:00.002-05:00

I've been struggling lately. Emotions whirrling. I completly trust in the One who made us, died for us, and is utlimately in control, but yet I have SO many questions! "Why!" is a big one for me. Colin is doing good, he is startig to gag on ever feed again, so hopefully his Fundo. is not coming undone, but I still have these unsettling feelings. Why must everything be so hard? Out of all he has been through, he has been a trooper, I could not do the things he has done. From adequate schooling, to just getting a blood test done, you have to jump through hoops to make progress. I'm tired of the hoops. I just want to enjoy Colin. I AM enjoying him, every second. I guess I put myself through torture, reading and becoming close with families facing the same or similar problems as Colin, then when they don't do well, it feels like a member of your family is not doing well. You grieve and shed tears for them as if they are your very close friends or family. "Don't read then" some may say, but it's hard not to read and become close to other blogs and their families. How many less prayers would Colin have had if so many "didn't read" his carepage and pray him through his Fontan last year? He only survived by the grace of God. I didn't coin the term "heart family", but I use it often, we are one family, even though we may never meet, we become close. Please be praying for Stellan. Over 5 million hits on his website. Jennifer (MckMama) has not gone into detail yet, but there has been a change in his care plan. He is not profusing (getting blood to) his extremities very well now, a sign of decreasing heart function. He is now vomiting too, she said she doesn't know why, but I have a sense that is from his heart too, although the Dr.'s didn't say that. I know of some kids in our group that have had that happen in heart failure. Click on MckMiracle button on the right to visit their blog. Keep up the prayers for him, the most adorable 5 month old in the world! :)
Maybe someday I will be able to wrap my brain around why the innocent have to suffer. I've heard the whole "Fall of Adam and Eve brought sin into the world" many times, but why does that have to mean that babies, innocent, babies and kids have to endure so much? I just don't get it, but I know I have to trust in The Almighty to bring us through every trial. And, to be a comfort to those who are going through the trials, like the Casting Crowns song says, we need to "love them like Jesus".
That's all for now.

Please, please, pray...

2009-03-23T15:34:00.002-05:00

Colin is doing good, I apologize for the lack of upadates, but I have to come on and ask you to pray for Stellan. He is in the hospital with SVT and his heart rate is SO out of control! Please see my sidebar on the right and click on the button that says "pray for Stellan", or MckMiracle. You will be directed to MckMama's blog and please keep praying.
Thanks so much,

Some possible changes..

2009-03-13T08:10:00.001-05:00

So, I am really considering a change for Colin for next year. We had his I.E.P. (education plan) a few weeks ago, and they cannot send Colin all day next year, so he was going to attend the same class as last year and this year again next year. It's a 2 1/2 hr. class. I am very pleased with his progress and his care, but I think for his sake, and mine he needs to go all day. Taylor will be in preschool next year, and this means I will have four children in four different schools, all starting and stopping at different times. WOW!! Not sure how I might juggle that, plus, I know Colin loves school, and I think he would do fine and benefit from that also. I know I will miss him SO much during the day though, but if he didn't have the delays, he would be in Kindergarten all day anyway, so it's really the same. I called the school and am waiting an appt. for a tour. He would be in a class size of about 8 and still be able to get his PT, OT, and speech. There is a nap time, which is good because he still does take naps. I'm just at a crossroads as far as his care and not sure what to do. I spoke with the case manager at the school he attends now and she said she would refer him if I decided to place him there. Everything has to be done through the school district. I might not even have to make a decision if the all day school decides they don't want him. They might not want to take him because of his serious heart condition, but I hope not, his heart is the best it probably will ever be right now and they said they do have other kids with heart problems.

Colin had a program the other night, he did so good, trying to sing and do the motions with the other kids. I'll post some pics, but I have to tweek them a little and brighten them up first. I'm almost afraid to say it, don't want to jinx myself, but he has been behaving wonderfully lately!! I'm so glad!! He hasn't been throwing fits constantly, only a few here and there, and is actually scooting on the floor to play when he gets home from school until it's time to get in his wheelchair and have a feeding at noon. He usually never does that, he only wants to be held or have me sit next to him in his chair. It's been wonderful!! He's such a good boy. His new thing is to grab your face with both hand when he gives you kisses. It's so sweet!! I can't even tell you how much I love this little guy and how grateful I am for every single min. he is here, which makes it so hard to have him go all day to school when I could be soaking up every little bit of him at home. I guess I just have to look at it like one of the girls, if he was healthy, he would have to go to Kindergarten next year, weather I liked it or not, he's not a baby anymore. I'm just really struggling with it, as you can tell.
Enough about that, another new thing he is doing is singing the "Annie song", He sings "meemorrow, meemorrow (tomorrow, tomorrow), I wuh woo, meemorrow". He's so adorable!! We, (I mean "I") am not so patiently awaiting the arrival of his new wheelchair. Paitence is not my strongpoint, I'm a right now kind of girl, and I'm ready for it to come in, hopefully it's much more padded and Colin won't get so bruised up when and if he throws fits in there. Hopefully it will come next week.
Well, I think that's all for now. Please, if any of you have special needs kids who have switched to an all day program, let me know your experinces. You can leave it in the comments or e-mail me at mordisfam6@aol.com
Thanks and have a great weekend,

2009-03-08T21:12:00.003-05:00

Colin is struggling with a cough and croup, but tonight I would just like to ask everyone to pray for Pastor Fred from First Baptist Church of Maryville. This is a neighboring town, about ten minutes from our house, and this morning, a gunman came in the church and shot Pastor Fred, killing him. I have no words really, don't really know what to say, it's just unbelievable that this has happened. We visited the church a few times, and it was wonderful. Everyone so kind and the pastor was just great! We love our church, however if we would have to switch for some reason, this would have been one we would have went to. Please pray for his family, his wife and two daughters, and for the church congregation. Here's a link if you want to check out the story. You might have to copy and paste it.
http://news.aol.com/article/illinois-church-shooting/374149

Please, please pray

2009-03-06T22:18:00.001-06:00

So we went to the Dr. today because Colin has croup again. He's acting fine as usual but was croupy last night and this morning. He was very stridorous this morning, but got better as the afternoon went on. He didn't have to have any steriod shots since he's in the early stages, but is going to be on oral steriods. He did wonderful at the Dr.'s office, which I was really thanking God for, since he was so bad and hateful last time. No pulling hair, hitting, or screaming this time. :)

He was gaggy on his feeds two days ago, and I kept him home from school yesterday and now today he missed because of the croup. We did get GREAT news today though. We got the letter in the mail today that his request for a new wheelchair was APPROVED!!! Praise God!!! I'm SO happy about this!!! The one he is using now is really not appropriate for him anymore. He's growing out of it, plus the brake is broken on one side and that really isn't safe for the bus at all. We should get the new one in about 2-3 weeks. I don't have much else for tonight. Please continue to pray for Jonah and leave some encouraging words for him and his family.
Have a wonderful weekend,

Please, please, pray...

2009-02-28T16:26:00.002-06:00

Please stop by Jonah's blog and pray for him, and his parents. They lost their first son to stillbirth and Jonah was born with a serious genetic skin disorder called EB. It is very serious and he can really use some prayers!! Here's the link:
www.patriceandmattwilliams.blogspot.com

2009-02-27T10:27:00.001-06:00

It's been a few weeks, so I thought I'd update. Colin is doing fine on the Pediasure. He doesn't seem to like the chocolate, although the last few days at school, he has drink 1 oz. That is wonderful for him!! I have been able to subtract that from his feedings at home, but he still won't eat much here. He's doing so much better with his walker, and the other day, the therapist took the handles off so he's not using those anymore. There are other handles, he's using, but it makes him do more of the work. He's actually been in a pretty good mood the last few days, with minimal fits. I hesitate saying that, because every time I do, I jinx myself or something, because then he starts acting up again. :)
The weather was nice yesterday so we went out and played ball and blew bubbles, and he really enjoyed that. It's cold now though and we are expecting snow again, so it will be a little while before we can do that again. I'm SO ready for Spring!! I don't remember if I posted about Taylor and her E.R. trip, but she has another follow-up today to make sure the cellulitis (skin infection)is clearing up. It's looking much better now and is no longer painful. I'm taking her to Monkey Joes again this afternoon. It's a place with those big air-filled jumpy things and huge slides. She loved it last time!! I can't wait until Colin can join in on the action. I know he would love that also. For now though, he enjoys just watching his sister and the other kids. The cath is still on as far as I know for June 30th. That's about it for now, he's getting off the bus soon so I gotta go. Thanks for the thoughts and prayers.

His cast...

2009-02-15T17:39:00.003-06:00

I was just going through things and realized I never posted a picture of Colins cast. I know it's very late now, since it's off, but I thought I would post it anyway, so you could see what he WAS :) wearing. Colin is doing good, he is still tolerating the Pediasure, which is great for him. Our life, however, doesn't seem to slow down. I was in the E.R. with Taylor on Fri. night through Sat. morning. She started screaming uncontrolably which is totally unlike her, and we found this huge raging red, blistery spot on her hip that went up to her belly. It was burning with fever, and hurting like crazy. She ended up having two blood draws, one for a CBC, and the other because the CBC came back with a high white count which can mean infection, so they did a blood culture also. Her urine came back with some white cells, so they think she has a UTI also, but we never could determine what caused the rash. She is allergic to strawberries, but hasn't had any, or anything strawberry flavored. It could be a cellulitis (sp?) but they couldn't say for sure. She is better now, but since it's healing, it isn't as red, but it has these little blisters all over. I'm supposed to call the Dr. tomorrow and see if they want a follow-up. After that we had a good weekend, the girls did well in their basketball game and Lee was the judge of the dog run or whatever it's called, for pointer dogs. No school tomorrow which is always nice for us since we are not morning people at all. :)
Have a great night and here's the pic.

Had to throw Taylors ice cream face in here too. :)

Long overdue update

2009-02-11T18:15:00.000-06:00

Haven't updated in a while, sorry. We took Kirsten and Colin to Glennon today. Colin had his monthly I.N.R. done and it was good, so we stay on the same dose of Coumiden. Kirsten had another endocrinologist appt. for the premature puberity and now doesn't have to go back anymore, unless she starts her cycle before age 11. Good news on both fronts. I saw Barb, the PA for CT surgery, and talked to her for a minute about the cath coming up. Dr. Fiore (CT surgeon) always said to stay away from the neck because all of the Glenn flow is from the neck, so I was concerned that his cath to close the fenestration would be through the neck. Plus Dr. Fiore said he would have to open just below the breast bone and "pull the string" he made around the fenestration to close it since he knew Colin had no acess through the groin. She seemed to think that it would be o.k. to go through the neck since it's no a line that will stay in. I asked her about any scar tissue that might develop from them working in there and might cause a blockage, but she didn't think that would happen either, so I guess we will go ahead with the cath in June to close the fenestration.

The other news is that Colin is now on full strength Pediasure!! That is a huge step in the right direction!! It is milk based, and he has not tolerated anything milk based in the past. We are trying to get him to tolerate it for a few more days and then try to give him some by mouth. I know it will be a long road, but if he can just drink a few ounces by mouth throughout the day, we can subtract it from his tube feedings and start to make progress with oral feeding and getting off the tube once and for all!! I think now it will be a little easier with him not having any more scheduled surgeries (besides his cath). Everytime he goes in the hospital for any extended period of time, we see a setback with him. That's how he was finally broke of his pacifier, was this last May and June when he had the Fontan. He would touch it after being on the vent this last time. Can't say I blame him though.

Hopefully I will be more on track in updating in the future. :)
Have a good week,

Dr. appt. update..

2009-01-14T19:08:00.000-06:00

Today was Colin's appt. with the hand surgeon. He freaked out immediately, and was not good at all for the appt. One of the reasons I beg Lee to go with me. Colin has a mean streak when he wants and bites, pulls hair, scratches, ect... Anyway, although it isn't a "bad" break, the Dr. said if he would've saw him right away after the break, he would have done surgery. I was kind of down on myself about that, since I chose not to take Colin to a "childrens" hospital, but I was so afraid of all the R.S.V. kids and flu kids in the E.R. that he might contract something just by being there. I asked if, by him not having surgery, he might lose any function in that finger, and he didn't think so, so I felt better after that. He said that with Colin being so young, kids heal very fast and his finger is already half healed, so he does not recommend surgery now. He did see how Colin is using the hand, and flailing it around when he gets mad, and hitting it on things. He's also bending it a lot when the splint is off, so he did suggest a cast. I suggested that at the last Dr. he went to, but she didn't think he needed it. The one area I know I'm knowledgable in is the medical stuff, so I wish the other Dr. would have listened to me about the cast, but he was actually being good at that appt. so maybe that's why she didn't cast it then. Anyway, he is casted now, and since kids wiggle out of casts easily, they had to put it all the way up his arm and past his elbow. He is doing good now, although he is very tired and cranky!! We have to go back in two weeks, and have another x-ray, and decide if he needs more cast time or not. After that, we had to go to Glennon to get Colin's I.N.R. He wasn't happy about that either, so he's had a long day. :)
That's about it, have a good night and stay warm.

When it rains...

2009-01-09T20:54:00.001-06:00

Well, as the old saying goes, when it rains, it pours. That seems to be true around here. We were in the E.R. again today with Colin. He was miserable all night, this coming from a boy who never shows any symptoms of illness and is always pretty happy, and this morning had a low grade fever. I looked in his ears, couldn't see one, since he was screaming, and the other looked like bloody wax, so I didn't know what to think. He has had a nasty sinus thing going on for a while, so I called the Dr.'s and they were both out sick today, so to the E.R. we went. Thank God for Glennon care at Memorial, because I refuse to take him to Cardinal Glennon where the E.R. is full of sick R.S.V. kids. Anyway, it turns out that Colin has a ruptured eardrum (the "bloody wax"), and the other ear is infected also, but not ruptured, and he also has a sinus infection. Poor man has been through the ringer lately. He is feeling better this evening, although he had a 102.8 fever that is rare for him. He missed school Thurs. and today because of this nasy sinus stuff. I hadn't a clue about the ears though. I guess that came on fast. I'm really hoping this is it for us and the E.R. now. I said that last time too. LOL :)
Have a good weekend,

Yet another hand specialist...

2009-01-07T18:26:00.002-06:00

Well, todays appt. didn't accomplish much. The break doesn't look "that bad" but judging by the look of his hand, he may need surgery. We have to go to another pediatric specialist to look at his finger. The problem is that his finger does not appear to be straight. There is quite a wide "V" between his middle and ring finger (ring finger is the one broken), this could be from swelling, or it may need pinned. The Dr. we saw today, said she thinks is just from swelling, but wants to make sure. The toss up is, since this is his left, and strong side, we don't want to lose any function, however, any surgery for him is a big surgery, so we don't want to do any surgeries unless absolutely necessary. Any anesthesia, or surgery is a huge ordeal for Colin, with his heart. Please pray for wisdom for the Dr.'s and for guidance for us to be able to make the correct decisions for his care and the best outcome for function with his fingers. Whew, I didn't think this broken finger would be so stressful!! LOL
Colin never does anything the easy way. :)

Hand specialist

2009-01-05T16:50:00.003-06:00

Colin has an appt. with the hand specialist on Wed. The ped. wanted to send him to a specialist to make sure that everything heals right. I hope they do something different with the splint, or cast it. I didn't know they could cast a finger, but apparently they can. That would be much easier than the splint, and the ace, he keeps taking that off. Tonight is the first night of basketball practice for Jenna, and then Kirsten's is tomorrow, so I'm off of here. :)
Have a great night.

Broken bones...

2009-01-03T21:42:00.001-06:00

Well, my poor little man now has a new injury. He was sitting in his wheelchair, as Lee was getting him out of our van, and just as the van door was closing, he waved his arm and got his fingers stuck in the van door. His ring finger and pinky were smashed and after much debating weather to "watch" it or not, and "watching" major swelling, we took him to get an x-ray. His ring finger is broken, not at the joint, thank God, that would have been a surgery, but just below the joint. He has to wear a splint for three weeks and then follow up with the ped. Please pray for my little man, he seems o.k. and it hasn't slowed him down. Every now and then, he will try to use that hand (it's his left hand, and his strong side), and he will grimace and hold those fingers. I can't believe the swelling and blueness right away, I would be screaming. I knwo this is nothing after what he's been through, but man oh man, I would be crying like no tomorrow. His finger looked rough, to say the least. Thanks for the support and prayers.

Welcoming the new year...

2009-01-02T15:25:00.007-06:00

First I'd like to say that Stellan is going home today!! Thanks to anyone who hopped on over to MckMamas page and prayed for baby Stellan. As we ring in this new year, I am so grateful for the things that have happened in 2008. It was a stressful, but blessful (is that even a word?) year as well. Colin's Fontan was May 20, and I was SO nervous about it, I knew it was the "make it or break it" surgery. Either his body would accept or reject the new blood flow, no in between. With Colin's history of not following the rules, I knew it would be a tough one. In true Colin fashion, the Fontan was very stressful, and he was NOT stable at all the first night. I'll include a post from his carepage that describes his state and my emotional state as well. BUT, just when I didn't think I could handle it anymore, God was there and lifting me up, letting me know I was not alone and to trust in HIM alone. There was also the overwhelming support of family and friends, 'strangers' (I don't consider you strangers, I just say that since we've never met) who left messages on Colin's carepage. That is so comforting in a time of uncertainty, to log on and read all the messages of support. Then we got the news that Colin was not going to stop with the pleural effusions (fluid draining from his lungs after the Fontan-3rd stage open-heart surgery) so he had to go back in on June 2nd and be fenestrated (create a hole in his heart to relieve some of the pressure of the blood flow). No one knew if this would work, and we were already discussing other possibilities of what to do next. One possibility was a cath to see if there were any more collaterals to coil, the other being that we would just have to accept that Colin's body did not accept the Fontan circulation and either take down the Fontan back to the Glenn (2nd stage heart surgery) and try it again in a year, or opt for listing him for a heart transplant. Miraculously though, after Colin's surgery for the fenestration, his drainage stopped almost immediately and he was on the mend. A few days after he was off the vent after the second surgery, he went into respitory distress, and it was God and some very, very dedicated attendings in the PICU that worked on him for over an hour, determined to try everything in their power to keep him from being re-intubated. He came out of it, and was on very high pressure of O2 to keep his floppy airway open for a few days. It worked, and he was able to be transferred to the TCU (transitional care unit, a step down from the ICU and where Colin will go no matter what. He cannot go to a regular floor, even for a minor illness). We were home within two weeks of the second surgery. SO, all that history, just to say how blessed we are to have him with us. How blessed we are to have three healthy girls, who have still thrived even though their mommy is gone a lot when Colin is in the hospital, who was gone a month at a time during Colin's Fontan, and in the middle of all these surgeries and hospitalization, we were planning to move. We did move, I should say my hubby moved us, the day Colin came home. He never got to come back to the 'old' house, but it didn't seem to bother him. We are blessed to have come so far with Colin's walking, and he is thriving in his gait trainer walking. I, personally, am blessed to have a mom who is a nurse, and I can go to her when I have any questions about Colin's medical care. :) Blessed to have a husband who is wonderful and takes great care of us, and a wonderful extended family. I never thought I could do the things I have done. Lee's dad died of a massive heart attack at the age of 43, and I was always scared of the heart, then I had Colin and his problems, I never, never thought I would be able to do the things I have done taking care of him, so I learned I am much stronger than I thought! A lot has happened in 2008, it has been an emotional roller coaster, but I learned many things and I learned to be grateful for the small things as well. Here's to a wonderful 2009! Colin has only one procedure left, on June 30th, he will have a cardiac cath to close the fenestration and then hopefully his O2 level will be in the low 90's, instead of the mid 80's where he is now. Please be praying for a smooth procedure. It will be wonderful to see pink lips on my boy!! AND pink toenails and fingernails!! May God bless you and your family this year!!

Here's a post from the first night of Colins Fontan (the first one) from his carepage:
Posted May 20, 2008 4:27pm
Colin is done and back in the P.I.C.U. Colin had the extra-cardiac Fontan, for those wondering. Sorry I didn't mention it before. He needs some prayers right now. He has been back for about 30 minutes, and they are working on him. He has an elevated temp. and his heart rate is higher than they would like. His blood pressure is up and down constantly and in order for me to get an update I had to stand at the P.I.C.U. doors forever until someone came out. Very frustrating, but they are working on him. They turned off all the lights in his room, I guess to see if it would help calm him and bring his pressure down, although I don't know if it would help since he's out and on a ventilator. Right now, I'm a mess, to say the least. He's in a big heart room, and you can see him throught the P.I.C.U. glass windows in the doors. I could see that he is very swollen and pasty white. With him not being stable right now, it's very hard. I don't know when I'll be able to go back and see him and I feel like I can't do this again. I know I'm stressed out and I'll feel better later, but I hope this is the last surgery for him because I hate this feeling and don't ever want to do this and see him like this again. Please pray for Colin, I'll update again when I can, for sure one more time tonight, maybe more. I know I keep saying it, but thanks for the support.
Millie

This one was from two days after the second open-heart surgery to create the fenestration, when he went into respitory distress. I never want to be in that position again:
Posted Jun 4, 2008 9:55pm
Colin is doing better now, he still does not have a "stable" airway, but he is better than before. They gave him three different breathing treatments, for wheezing, and to help dry up secreations, or loosen them so they can be suctioned. He is on 6 liters of O2 through a face mask now, instead of a nasal canula. That is a lot of O2 for him, but he does better with it. The attending Dr. thinks it has a lot to do with him being to sedated to breathe deep and cough up everything. It is such a fine balancing act to keep him awake enough to breathe right and keep him sedated enough so that he is not making his breathing worse by having a fit. Please pray that he is able to stay off of the vent and will not have anymore episodes like this again. He really scared me! He was fine one minute then went down so fast, desatting to 58. His sedation drugs are being held right now but may be given later depending on how he does, his blood gas wasn't too bad, but the chest x-ray showed nothing because he was moving to much. They worked on him for about an hour, he was actually on the up end when I updated, because I was to scared to leave the room. He's a little better now, but no one will use the "stable" word yet. He has done so well after the fenestration, I don't want another set back for him, or for my emotional well-being. :)Thanks for all the prayers, you guys read the update pretty fast, I didn't know if anyone would get it in time. LOL
Millie

Here is a pic of Colin in his gait trainer (walker) and walking!!!

Prayers for baby Stellan..

2008-12-30T18:38:00.002-06:00

Please hop on over to MckMama's blog, if you look to the right you can click on the MckMiracle button and go to her blog. Baby Stellan is very sick with RSV. He was "supposed" to be born with heart failure and not "supposed" to live. However, we know that God is bigger than the Dr.'s and Stellan was healed of his heart failure. This is very close to my heart since all we have been through with Colin, so please visit MckMama's blog and pray for Stellan. So far he has been able to stay off the vent, and every heart mom knows how hard it is to see our children like that, so please continue to pray he will not have to be intubated and will get better very soon.

Not much new in our end since my last post, Taylor had to have her ear "vacuumed" out today, because of all the drainage, and if we can ever get this infection cleared up, they might just wait and see how she does without the tubes, rather that doing another surgery to put a new set in. We go back in two weeks.

Don't forget to pray for Stellan. :)

Christmas...

2008-12-27T21:32:00.003-06:00

We had a wonderful Christmas!! I posted some pics below, it only posted the ones with the girls though, so I'll try again and include Colin in this post. It made me do it in two separate posts. Anyway, it seems we just can't get rid of the flu bug around here. I have been sick with a nasty cough, and chest cold. On Christmas day, my ribs hurt so bad from coughing and coughing, but I'm feeling much better now. Still have a cough, but much better than before. We got the kids' pictures taken today, Colin was a little stinker and wouldn't pose at first, just kept having a fit, so I couldn't get all four of the kids together, but I got the girls together and then once Colin calmed down after a little while, I was able to get him by himself. The big girls also had to get their b-day pics done. They turned out good and I can't wait to get them back. I purchased the smiles by wire thingy, but it will take 5 days or so for them to be uploaded onto the internet so I can e-mail them or put them on any website. Just wanted to share some Christmas pics, so here they are, enjoy. The first one is just a cute pic of Taylor. LOL

2008-12-27T21:28:00.001-06:00

Cardiology update..

2008-12-19T21:17:00.000-06:00

I know it's been forever since I last updated. Everyone has been sick around here...still. We have all had strep throat, then once everyone was better from that we had the stomach flu and passed it around. Kirsten had her 9th b-day and it was fun!! She still has some b-day money to spend, so she is enjoying that and searching for the perfect thing to buy.

Colin's cardiology appt. was today, everything was fine! We did NOT have an echo, but after some extensive talking with his cardiologist, I was o.k. with that. He hasn't had one if forever, and I was going to switch Dr.'s and/or hospitals if he did not have one this time. I did discuss it with this cardio. though and got all my questions answered and feel fine with not having one this time. His Dr. is really wonderful, and jokes around constantly, but is dedicated at the same time. Colin's pressures, O2 sats, pulses, and lungs sounded fine, there was no murmur (except the normal one from having only half of a heart). He did have a chest x-ray and his heart was not enlarged, and his liver was not enlarged and his spleen was fine. All things that are good and indicate good heart function. With all that info. considered, I was o.k. with no echo. He also said that if Colin had a lot of regurgitation (backward flow of blood through his tricuspic valve), then he could hear it with the stethascope. That was really my main conern, aside from the overall heart function. Too much regurgitation can result in a valve replacement, and decreased heart function. The Dr. did say at the end that Colin could have an echo, but I decided not to put him through that since we were able to talk in depth about everything. Colin will not go back to see the cardio until he has a cath to close the fenestration. Initially the surgeon said that he would have to go back to the O.R. to close it, and even put a "string" around the hole and trailed it along his breastbone so that he can make an incision, pull the string and close the fenestration (hole). Now, though, the cardio. said that he CAN close the fenestration through a cath, he will just have to go through the neck instead of the groin, since Colin has no groin acsess. His exact words, actually, were "Dr. Fiore's on drugs". LOL He's so funny like that, but I guess that Dr. Fiore wasn't thinking that the fenestration could be closed by doing the cath through the neck. I guess when the time is close, they will have a conference on Colin's case and decide what to do. Sometimes Dr. Fiore does not want anything done to the neck since much of the blood flow for the Fontan comes from there, and he doesn't want anything compromising that. Sorry that was so long!! Seems like I've been writing forever. :)
That's the big news of the day, and all I have time for right now, but I'll write more later. God bless everyone!!!

Sick...sick...sick...

2008-12-02T08:50:00.003-06:00

It seems someone is this family is always sick for the past few months. I'm so tired of sickness!! Although I'm feeling much better, Lee is still down. We have both had fever, body aches, sore throats, ect.. We got some prescriptions called out yesterday for us and I'm much better, but Lee is still running a fever today. Colin is now on antibiotics for a sinus infection and is still coughing quite a bit. Him and Taylor went to the Dr. yesterday, Taylor has croup again, and got a steroid shot and then some oral meds for home. I sent Colin to school today, so I hope he does well. Taylor is doing WONDERFUL potty training. She is actually not 'training' anymore, and has had no accidents at all in forever, we don't even put a pull-up or diaper on her when we leave on long trips. She is funny though, she has had trouble with constipation, and says "I can't get it". Kind of gross, but cute at the same time. Her new saying when I ask her something is "betause, I dun know". Last night she sang You Are My Sunshine to me all by herself. I was very impressed, she's only 2. :)
If you are up for a raffle for a wonderful camera package, and want to help three great organizations, just look on the right sidebar, and click on the "Rebel For A Cause" button. It's the one with a camera with a red X through it. It's a great camera package, with an extra zoom lens, sd card, camera strap, and I think one more thing. Check it out, the organizations are listed on MckMammas blog and 100% of the money goes to the organiztions. One helps families that are facing serious or fatal prenatal diagnosis' and the other two help with adopting special needs children from China. Read more at her page.

That's about all for today.

2008-11-28T21:43:00.004-06:00

Mr. Colin is feeling pretty crappy right now. He is not himself, he has had this nasy cold and cough for a while now, and his poor nose is red and irritated and running like crazy. He's had a fever off and on also still. He has his good moments, but, unlike he usually is (even when he is sick), he's not himself. Usually you can't even tell he is sick by the way he acts, but you can definately tell the last few days. Despite this, we all had a good Thanksgiving, we saw Lee's family in MO and that was a good time, and then we came home to my moms and dad's house and ate some more, not that we needed to eat more. LOL
I got up WAY early this morning at 3:30 to get out and shop for the early bird specials. Taylor is pretty much done for Christmas now. Thank God for the doorbusters! We put our Christmas lights up this evening and they look good, I LOVE this time of year. We will finish putting them up tomorrow, my hubby gets to climb on the roof and do the roof-line. Taylor (2 y.o.) loves the nativity scene this year, and loves baby Jesus. She kept moving him, and saying "the baby is so tired" because it looks like his is sleeping in his manger. She say "I want to 'pet' the baby"! She was so funny! She is all about babies and loves the baby Jesus.

Well, thanks for the prayers, we need them for Mr. Colin and his very runny and sneezy nose. :)

2008-11-25T20:43:00.002-06:00

So today is my 31th b-day, and I had a great day! We didn't do much, I was actually sick the first half of the day, but was feeling MUCH better in the afternoon and when Lee got home, we had cake and ice cream with my mom, dad and little brother (whose not so little anymore, since he's 15, but I can still call him that, right? LOL). Colin is doing good, with no more fever, but we have been keeping him home this week from school since he has a "virus". We don't want to expose him, or have him expose someone else. He really loves school, so we hate to keep him home, but I don't want to take any chances either. Everyone else is fine, Jenna's feeling better since her ear infection, but all four kids have had this lingering cough for a few weeks. Kirsten had a Thanksgiving party today at school that I was able to attend, and that was fun. It's nice to be able to go to their functions, I'm not able to go to many of them since I have no childcare, but my mom was actually off today so I went. Hope everyone has a GREAT Thanksgiving, I'm SO very thankful for my family and for Colin's health right now. I know it could be very different for him, and I'm so thankful that he has beaten the statistics and is doing well. SO very thankful for my girls too. My kids are my life and I thank God for them every day, as well as for my hubby and family.

Jennas party...

2008-11-23T13:41:00.006-06:00

We had fun at Jennas party. She had a blast and some friends from school came as well as family. One of her friends couldn't be there, but we hope she is feeling better very soon. Not much to say, just wanted to post some pics.
Have a great day!!

2008-11-21T22:03:00.002-06:00

So Jenna has another ear infection. This was the last one she could get before she has to have tubes in her ears again. She had tubes put in when she was a little over 1 yr. old, she did really good after that, but has been getting a lot of ear infections again. I asked for one more chance, since I can't seem to remember a lot of her morning doses. I don't know why I might forget. LOL With four children, going to three different schools, Colin getting on the bus by 7:20, Jenna at school by 8:00 (I take her and Kirsten, they don't ride the bus), and Kirsten at a different school by 8:20, lets just say I'm extremly busy in the mornings. :) Any excuses aside, I should have been more consistant and I wasn't, so now I feel like I caused this infection and the Dr. agreed to give her one more chance. She put her on a one time a day antibiotic (thank God!) and was extremly nice and thought it was funny, she said "I don't know WHY you would forget now and then". After seeing Colin at the last visit, I think she knows what I have on my plate here. LOL I'm so getting off track here, but the point is that if she has one more ear infection within a month or two, she will have to have tubes again.
We had a meeting with a wonderful gentleman from United Seating and Mobitlity today and with the therapist from school and got Colin measured and went over different options for a new wheelchair for Colin. I really hope it will go through and the insurance will pay for it, because it looks like it will be a great fit for Colin and the options they have for the chair, are wonderful. It will take about 3 months to get an answer, but it will be worth the wait if it goes through. That's something to be praying for. :)
Jenna's birthday party is tomorrow, I'll have some pics up tomorrow or Sunday. We're having it at an arcade place they like to go to. She will be 7. Her actual b-day is on the 28th. Mine is Tues., but we won't talk about that. I'll be 31, and no, age does not bother me one bit. :) I feel wonderful, and that's what counts, even if my kids call me old sometimes. I do have a "grabber" though, and it saves my back from picking up tons of toys, so I guess I'm a little old. LOL
That's all I have for now. I'll post some pics later.

Black eye..

2008-11-17T21:55:00.002-06:00

So my man came home with a black eye today (my little man, not my hubby LOL). Not to bad, but a definate blue streak from the corner of his eye going underneath his eyelid. I don't know how it happened. He was throwing a fit this morning, but I know he did NOT have it before he left for school. It is possible, I guess, that it didn't show up until later, but I called the teacher and asked if he fell or anything, and she said not that she was aware of. He doesn't even know it's there, it isn't bothering him. He could have hit it on his gait trainer too, he has been leaning forward a lot on it, and then the handle is near his face, but I would like to have a reason. He did pretty good today eating, he ate some noodles, which is great for him, and some chocolate ice cream. Only a few bites, of each, but it is progress. Jenna has a sore throat so I'm hoping she doesn't get strep again. Not much else going on around here, just keeping myself busy with the addicting myspace games and tons and tons of laundry and cleaning. I try to get everything done in the short time Colin is in school (only two 1/2 hours) since when he gets home, he is usually tired and is a stinker sometimes, and I have to sit right by him, or he screams, sometimes even that doesn't help. He has been melting my heart, and saying COMPLETE sentences and tells me "I love you mommy". In Colin language, that would be "I uh-oo mommy". Too cute!! His dad just left the room and he is saying "Wooo gaggy", that would be "where's daddy" in Colin language. LOL It's getting really cold here, but we are still making our nightly trips to the hot tub. Man, I love that thing, but it's cold going to and coming from the hot tub. :) Well, it's time for bed, and mommas tired, so I'm signing off.
Have a good night.

Long overdue..

2008-11-13T18:26:00.002-06:00

So I know this post is long overdue. Colin is doing fine, his holter monitor and EKG test results came back fine, so that's good, except it doesn't explain what happened at school that day, and that is very scary for me. The girls are doing pretty good, they had good grades on their report card, to which we had to break out the cash for. LOL We promised them money for straight A's, so they had a nice shopping spree. It's getting cold here and flu season is upon us so please pray for Colin to not be sick this time. He has a bad cold right now, that is still hanging on for about two weeks, but he's doing good and his lungs sound clear, thank God. Taylor is potty trained now, it was pretty easy with her, we got lucky. She is right at 2 1/2 so she was ready. Colins new show is Spongebob, he loves it!! He sings the intro and it's so cute! Jenna's b-day is on the 28th, mine the 25th, but we won't talk about that one. :) Jenna will be 7, growing so fast. Her party is next weekend, so I'll post some pics after that. Not much else going on around here. Thanks for supporting my little man and our family.

Update and some Photos

2008-11-07T08:59:00.005-06:00

**Update** I don't know why, but the pics are cut on the right side, so they are not centered. Who knows, but you can still see them. :)

I took Colin to the Dr. for his check-up on Wed. and it was a trip, to say the least. He is always so scared, but hasn't acted like this in a LONG time. He screamed the WHOLE time, and I don't mean crying, I mean, throwing his head back, kicking and SCREAMING!! All the while, getting purple because of his heart. When I did pick him up so the Dr. could examine him, he was hitting, pinching, scratching and pulling my hair. Neither one of us could believe the way he was acting. That will be the LAST time I take him by myself. I thought it would be easier since it was just me, him and Taylor, but boy was I wrong. His check-up was good, he's had a cough for quite some time now, but he sounded good. We didn't get his O2 sats since he was such a bad boy. The Dr. was so sweet, we see her all the time between the four kids, and then Colin's routine check-ups. She said I was a "saint" for keeping myself composed while he did that. She didn't see me cry all the way home though, because it is so frustrating that he acts like that for me. I'm the one who takes care of him all day, most of the evening (with my hubby's help), there for every visit, every hospitalization without leaving, every stick and prod and poke. I'm constantly by his side taking care of him, yet he acts the worst for me. I don't get it. Anyway, just when I thought I couldn't take anymore, Lee (who I called to see when he would be home) had called my dad (I didn't know he was going to do that) and he came up and got Colin and took him downstairs. Then, my dad had already made supper and brought it up to all the kids so I didn't even have to cook for them that night, and for a little boy I watch for a few hours after school each day. That was a huge relief and I was VERY grateful. Gotta keep praying for strength for me. :)
Colin was all happy last night, and we got our leaf blower, yes the easy way out, I know, but we got all the leaves in a huge pile and let the kids jump in them. Colin even enjoyed throwing them around. That's pretty good for him, because he doesn't do well with new things and some textures/feelings of things. Here are some pics. I'm going to use the one with the four of them for our Christmas cards. It was the best one of the bunch, even though Colin is not smiling right. I always want to get the photo cards, but can't afford them at the photo place, and never get a good one with them all dressed up. Let me know if you think the leaf photo of the four of them is to "cheesy" and not Christmasy (not a word, I know) for the cards. :)
Enjoy and have a great weekend.

Taylor

Colin, the look on his face says it all. :)

Kirsten

Jenna

Taylor again

Kirsten, Jenna, Colin, and Taylor

2008-11-01T21:37:00.004-05:00

Just a short update to say that Colin is feeling much better now. When he does cough (not very often), its not croupy anymore. Thanks for the prayers. We went to a bonfire at a friend from church's house yesterday. It was fun, it's always nice to socialize with everyone and catch up a little. Taylor had a blast playing on all the kids riding toys, and she actually talked to three people. LOL She is such a chatterbox at home, and can out-talk anyone, she's actually a great talker for her age, but if anyone talks to her outside the family, or in a store, she clams up. She will wait until they walk away, and say "What'd they say?". It's so cute. I think she may be coming out of her shell a little bit. :)
Anyway, no new news, that's a good thing. Have a great weekend.
By the way, if you want to read about a true miracle, in a baby who "should've" had a CHD, go to the 'my charming kids' blog on the right of the page and read their blog.

2008-10-31T09:18:00.004-05:00

So Colin is sick again with croup, although he is feeling much better now and went to school today. It is never a dull moment in this house. I love my kids SO much, but they sure do keep my busy. We were at the Dr.'s office three times in a week, with Colin's episode, then Jenna had an ear infection, and the with Colin's croup. Then I thought I would have to take Taylor to the E.R. to get her hand/pinky finger x-rayed because she got it slammed in the door pretty hard. More info. about that and other Colin "medical" stuff on his carepage. www.carepages.com under the carepage name ColinMordis. I'm having trouble with Colins button and we have an appt. to get him measured for a different length. It's starting to get tight against his skin and irritate him. Colins friend Jaiden had his Fontan yesterday and is doing good, so please pray for him to continue to do well. I went for my cardiologist appt. on Wed. and found out I have a racing heartbeat, which I obviously already knew, since I can feel it all the time! They make you go into the office to tell you that, and give me a script. So I paid thirty dollars for the five minutes the doc talked to me and handed me a script. It all started when I was pregnant with Jenna almost seven years ago. I had a racing heartbeat, but they thought it was from being pregnant. It has bothered me off and on all these years, but since it wasn't consistant, they never did anything about it. Well, in Sept. when I went for my routine EKG and lab work for my hystorectomy (sp?) the EKG was abnormal. They went ahead and did my surgery, but I went to the cardio. to follow up. It is called eptopic atrial rhythm and it's from the upper chambers of my heart. I had an echo and that looked fine, there is no stretching of the upper chambers that can cause the rapid heartrate, so he said he doesn't really know why it's so fast. Anyway, it's not dangerous, I just have to take a pill everyday and hopefully that will slow it down. It's a very small dose to start out with, so we might have to adjust it later. Please also keep my cousin in your prayers, actually she is my cousins wife, but she has been diagnosed with MS. She was having trouble with numbness and tingling in her hands and legs, and it got to where she could not lift her leg to get into the car, or climb over the baby gate in their house, and they finally made an MS diagnosis. She is better now, on two different meds, but still falls some and is using a cane to get around so she doesn't fall. They have three kids, from one to five yrs. old. Please pray for her, she has had a rough go of it. She is around my age, maybe a year older, so about 31, or 32, and already had to take care of her mom while she died of cancer, it was quite a long process, and was on hospice for a long time, and was the primary caregiver, then in her early twenties, she developed breast cancer, which is so unexpected at such a young age. She has beaten that, and now will hopefully get this MS into remission. She starts a new medicine, with giving herself shots one time a week, but the side affects mimick the flu so you feel pretty crappy afterwards. I'm beginning to write a book here, but I do appreciate all the support on here, and I'm really liking this blogging. LOL I decided to keep Colin's carepage and just post more medical things on there, and still do this for more of the family things, ect...
Have a great weekend, and be safe.

2008-10-25T19:02:00.003-05:00

Good evening,
Colin has been doing good, no more episodes. I forgot to say that they got their flu shots at the last Dr.'s visit, Kirsten and Taylor couldn't get the FluMist, since they have a history of wheezing, but Jenna could, and didn't want to. Go figure, she wanted the shot. She has always had a high pain tolerance, and never cries for those things anyway. We were back at the Dr.'s today, we lucked out and this was their Sat. in the office. Jenna has another ear infection. If she gets another one within two months, she will have to have tubes in her ears again. She had them when she was a little over a year old, and has done great since then, even after they fell out, but she has been getting them a lot lately. So, please pray she doesn't have to get tubes again. Poor thing. We took the kids to the arcades last night. They all had fun, we actually got Colin out of his wheelchair and let him on some of the driving games and stuff. It was the first time we have ever done this, and he had a really good time!!! As you will see in the pics, he is smiling really big, and it's not just the "cheese" smile, he is having lots of fun. I want to start doing that more, we have had to adjust his feedings to do this, but I want to get him out more and start letting him enjoy more things like a normal little boy. It is much harder though, with his feedings, especially since he is gaggy more now and we are basically on continuous feeds now. Not much going on today, just the Dr's appt., OH, and I washed my horendous car today, and I'm not kidding, five minutes later, I'm sitting at a stop light, and a flock of birds came by and pooped on my van like five times!!! MAN, I hate that!! I thought it was funny at the same time, but just when I FINALLY get it clean, that happens. LOL Go figure. LOL Well, I better get off of here, it's getting late and my poor kids haven't eaten yet. :)
Millie

On the motorcycle with his daddy.

Love that smile

He was genuinly (sp?) happy about playing :)

Colin driving..

Kirsten, it's kind of blurry, sorry.

Jenna playing, and not wanting me to disturb her LOL

Taylor loved that ride!!

Taylor having fun

2008-10-23T16:18:00.002-05:00

So we went to the hospital today for the EKG, and the cardio. nurse was so nice and let us order the holter monitor under the cardiologist who was in the clinic today, even though it wasn't Colins Dr. so we would not have to have the pediatricians office order it and have to go back tomorrow. He did not like it at all, but he's fine now. I have an update on Brianna, she had a stroke after surgery, and has little movement on the right side, also has no sight in the right eye and little to no sight in the left eye. I feel so sorry for her and her family. Please pray for her, that this tumor will shrink (since they did not get it all) and her sight will return. She is also having PVC's with her heart, they think that it's from the tumor too. That's about it for now, I'll update more when I know the results of the tests.
Thanks so much for the prayers,
Millie

Colin had a scare..

2008-10-22T20:27:00.002-05:00

Today while Colin was at school, they were pushing him out to the playground and a teacher noticed that he was leaning to one side a lot so she went around in front of him and his face was blue. She shook him and called his name and startled him a little and he "woke up" and his color got better. They took him to the nurse and his O2 was 71, then a few minutes later, it was in the low 80's. I can't remember the exact number. I called the Dr, and we went there this afternoon. He was scheduled for a check-up on Fri. anyway, so we just moved it up. He has acted fine ever since this episode, and his sats at the Dr.'s office were 87, which is great, for him. We don't really know what happened. He could have been sleeping, but that does sound strange that he would go to sleep so fast, and the blueness would have been from his head in a strange position, or he could have had an arythmia, which is MUCH more worrisome. We go for an EKG tomorrow, and then probably Fri. we will go for a holter monitor and get his INR too. Please pray this is nothing serious, and that it doesn't happen again. BUT, if he does have an arythmia, that it DOES show up on the holter monitor. I'd rather him not have that, of course, but at least if he does, and it shows up, then we can treat it. Arythmias can be fatal in his condition, so we really need to know what caused this. Please, please pray for my little man, this has scared me. It really scared Miss Elaine (one of his teachers) also. I can tell she really loves him and he really loves her too.
Please pray for my sanity too...last time he had something like this, or we had a call that came at the middle of the night, I couldn't sleep, you dream of something happening. When we got the call to come to the hospital when he was a month old, we almost lost him, and I could not fall asleep for weeks, thinking I would wake up to the phone ringing, and we would be getting "the call" again. These are things I will never forget, like when the baby coded in the next room. All you could hear was bells ringing, and Dr's. and nurses talking loudly giving orders or responding, I could distinctly hear the machine voice saying "stand clear" in preparation to shock the boy. I found out later through "googling" his hometown, that he was 7 months old, he was in a car wreck, and his carseat was not properly fastened down and he was ejected. He died a few days later, he survived the first night, when I heard everything, but he had surgery on his belly, and head injuries, and died a few days later. It was a Hispanic family, and they didn't speak English, so I couldn't even tell them I was praying for them, and now everytime I see a Hispanic family that has a young boy and older children (which he had), I think of him and his family and say a prayer. Those things stick with you. I don't know how I got on this track here, I'm off the subject, but that's what's on my heart tonight. Scared something might be wrong with Colin, always feeling like "when is the other shoe going to drop", but trying not to dwell on it and enjoy every breath he takes, even when I get agrivated when he's having a fit. LOL :)
His favorite (sp?) song right now is Itsy Bitsy Spider, and he's so cute trying to sing it. We can understand him, but most people don't. He does the motions and everything. He loves to sing You Are My Sunshine. I sing it to him, and he sings the last word of every verse. He says "Away" for the last word, and he says that pretty clear, and then we clap. He's so cute. I feel like I need a confirmation that he is going to be fine, and that would make me feel much better, but it seems I pray and pray and hear nothing. It's so frustrating, I want to hear, like I did when I was so upset and praying when he was in the hospital, but I'm hearing nothing. I know God is watching over him, but his selfish mommy needs some confirmation. Someone give me some wise words. :)
That's all for tonight.
Millie

Update on Brianna..

2008-10-16T18:07:00.002-05:00

Brianna made it through the surgery, she is not really awake yet, and they don't know if she can see yet. She is waking up periodically and moaning in pain and holding her head (poor baby) but is mostly awake. I don't know any specifics, if she is on the vent still or not, but please keep praying for her and her family. Pray this tumor does not grow anymore and that her tumor will completly go away and she will regain her sight.
Thanks for supporting, not only Colin, but also his friends,
Millie

Prayers please...

2008-10-14T15:43:00.002-05:00

Those of you who followed Colins carepage may remember a little girl named Brianna. Her grandmother works with my mom and she has a brain tumor. For those who are new to Colins blog, she is five (maybe 6 now?) and had a "wondering eye". They took her to the eye Dr. and she was found to have a brain tumor. She had brain sugery twice, and the Dr.'s were not able to remove all the the tumor due to it having "fingers" that ran throughout her brain. She has been undergoing chemo and has remained stable. The MRI's have been the same, no huge improvememt but no growth either. Last night she had a very bad headache, and went blind. They took her to the hospital (same one as Colin) and she had to have brain surgery today to try to releive some of the pressure from her brain and hopefully regain her sight. Please pray for her and her family. Also, please pray for Seth's family, he gained his wings. Please pray for their comfort and peace during this time. His blog is to the right listed as Expectant Hearts. Thanks for the prayers. My kiddos are o.k. Kirsten is still sick, but Jenna is feeling much better.
Have a good evening,
Millie

Sick of sicknesses..

2008-10-12T20:56:00.002-05:00

It just the beginning of cold and flu season, but already Jenna has strep throat, and now Kirsten has a high fever and her throat is hurting. I'll be calling the Dr. for her tomorrow. Colin has a very runny nose and is pretty sneezy. We stayed home from church yet again from one of the kids being sick. It seems like it never ends sometimes. I need church, I love worship and I hate it when we can't go. Those who know me know that I LOVE music, and our church has great worship. Anyway, just a blah day around here. I know that if this is all I have to complain about then I'm doing wonderful, so I'll stop complaining and be greatful for all I have. LOL
On an embarassing note, I forgot that there was no school tomorrow (Kirsten would've had it anyway, because she is at a private school and they are off later in the week for "Feast of Tabernacles"), and would have wondered why the heck the bus was late for Colin and then took Jenna to school. That would have been SO embarassing!! Thank God the schools called and reminded the absent minded parents like me. LOL
That's about it tonight, I put a new pic at the bottom of the page, I played around a little with the Paint program and made it. I always wondered how the "tag" makers did it, and I finally figured it out. It's my first, so it is not perfect, but I like it anyway.
Have a great evening, and enjoy the kids tomorrow, since there's no school. LOL
Millie

2008-10-11T18:31:00.001-05:00

I had to do two posts to get all the pics in, so please read the last post also. :)

Some pics today..

2008-10-11T18:15:00.004-05:00

Today Colin went outside for the first time to play!! Besides the park, it's the first time Colin has went outside at our house to play. We got him in his gait trainer and I threw the ball to him (he LOVES to play ball) and I made his daddy take some pics of him. I'm a total picture freak, so there will be a lot on here at times. The girls rode their bikes and played basketball too. They went for their basketball evaluations today. It's at a local church. We have never done this before, and they have never played on a team, so they were excited. For some reason I thought they would have a mixed team, but Jenna and Kirsten will be on two different teams. Looks like we will be doing a lot of traveling for practices and games with them on different teams, but that's o.k. as long as they like playing. Jenna is feeling better with her throat so that's good too. :)
Here's some pictures from this afternoon. Colin loved it and was so happy, he missed a feeding, but we will make it up overnight with his continuous feeds, it was worth it! The other pics are of Colin sleeping with his daddy today. I love it when he sleeps with his hands behind his head!!! :)
Have a wonderful weekend,
Millie

2008-10-10T13:12:00.005-05:00

So Jenna does have strep throat. Please pray that the other kids don't get it, and that she feels o.k. She is such a trooper and has no fever, acts fine. On other news, anyone know how to MAKE a two year old girl KEEP her clothes on?!? LOL Taylor changes at least five times a day, but mostly just likes to run around naked. I tell her "boobies" are private!! Probably too much info. there, but no matter what I do, she insists on taking her diaper and clothes off. She's such a good girl about everything else though. I'm way off subject here, so I'm gonna say goodbye. :)

Small update..

2008-10-10T08:25:00.002-05:00

Just a small update this morning. Jenna has lovely white spots on her throat today, so she is staying home. I'll call the Dr. when they open. The girls are supposed to go to their basketball evaluations tomorrow, so I hope she is feeling up to it. They are very excited to be on a team, it's the first time for both of them. Colin and Taylor are good, Taylor is still sleeping now, which is unusual for her, but I'm not waking her up. :) We will probably be heading to the hospital for a strep test. Sometimes they don't see you in the office, they just order a strep test in the lab and get the results faxed over. I'm liking this blog, but I don't have a lot of the people from Colins carepage switching over yet, so I hope they continue to pray for my little man, even if they don't necessarily keep updated on him anymore. Once everyone is used to this site, I'm going to make a few posts about his last surgery, I'll take them from his carepage, because there are some that are new to the page, and I want to give an idea of what his latest surgery experience was. I always like to know the "backstory", so I know some will apprecitate that also. Not much going on around here, just a sick little girl. She never acts sick though, she's very pleasant, actually. :)
Have a good day,
Millie

Please pray for Seth, and his family. If you look on the right, there is a link to his page, it's called "expectant hearts". His family could realy use some prayers right now. He has had a very rough go of it and his parents had to make a very hard decision.

Subscribing...

2008-10-08T21:24:00.004-05:00

So the only thing I didn't like about this blog for Colin's updates versus the carepages is that it doesn't send out e-mails to Colins supporters when I update, but now I've found this FeedBlitz thing that does it for me!! I am so excited that now, when I update you can get an e-mail so you don't miss out on any posts. This is very handy when Colin has a procedure or surgery (not that we are expecting any in the future, but who knows). All you have to do is enter your e-mail addy in the little subscriber box on the top right (above Colins swimming picture) and it sends you an e-mail. Then you check your in-box and click the link to activate it. I've never used it before, so if there are any problems, let me know and I'll see if I can figure it out.
Colin is doing really good, we are going to try to get him a bed. He is four and still in his crib, and he's getting too big for it. I think the only kind we might be able to get is a standard hospital bed. Hopefully it will be high enough, because he is heavy to lift and put down in a bed. The insurance is such a battle, I don't remember if I put this on his carepage or not, if I did and your reading this for a second time, please forgive me. My brain isn't the best right now, it's about time for bed. LOL
Have a good night,
Millie

2008-10-07T09:52:00.000-05:00

Well, I think I've finally figured this thing out. I might switch from the carepages to this blog, I like the different layouts you can have here. I hope everyone will make the switch with me. I haven't had much time to devote to learn about this new blog, so that's why it has taken me so long. If anyone has any pointers, feel free to let me know. Kirsten and Jenna are doing good in school, and Colin loves his school. I found out he can go there one more year, even though he turns five this summer. It's actually pre-school, but he gets his therapies there, so it's been wonderful to have him go to school there and the teachers love him. :) Taylor is enjoying a few hours with just mommy. She is a Dora nut so she watches that all morning. Thank God for DVR!! LOL We have all the Dora's on DVR and she watches them over and over. She is talking like crazy and comes up with some pretty funny stuff. I have to check in to getting Colin a hospital bed. He is growing out of his crib, I think it will be a battle with the insurance though. All in all, everone is doing good, and we thank God for that. We know it could be much worse. Here's a pic from the air show. It was a lot of fun.

Millie

All four kids standing in front of the wheels of a huge plane at the air show.

Trying to figure this out...

2008-08-11T16:36:00.001-05:00

so this is basically a test post....:)