thursday, December 3, 2009

ok so I will apologize right away for not updating this in so long.I am sorry. Anyway things are going really well. We have settled into a somewhat ordinary life, other than meds every day & trips to CHOP. Tucker is growing by leaps & bounds & is just developing such a personality. He is the happyiest baby ever. He wakes up every day smiling. He is cooing, & talking up a storm. He plays w/ his toys, & loves attention. We are still working on tummy time, but every day gets better.
As far as his recovery, he is doing fantastic!!! His ounts are all back to normal, we are just waiting to see T-cells, which are basically the backbone of your immune system. Our next appt they will be doing a complete immune test workup on him, so we will know more then. he is starting to catch up w/ his weight. he is also catching up developementally. He is just a little behind as far as the strength of his neck, but he is really getting stronger every day.
We feel so blessed to have such a special baby!!

Tuesday October 27, 2009

Another trip to CHOP today in the pouring down rain. It was a crappy drive, but brought good news. We dropped 3 meds today!! That means no more NG tube!!! Tucker is very happy bout that. Everything else is good too except He is not gaining any weight, so we are increasing his calories in his formula. We also found out that so far Tucker has no t-cells yet, but that is to be expected at this point.
He is really coming along developmentally. He is reaching for things & rolling over, & talking up a storm.
LIFE IS GOOD!!

Wednesday, October 21,2009

So once again we have an amazing baby!! We were at our weekly appointment at CHOP yesterday, it was a long day, but w/ good news. Tuckers has an almost normal level of lymphocytes!!! how amazing is that?? They said that at this point they didnt really expect him to have any yet, but once again he fooled everyone & his level is just about normal. His white blood cell count is now in the normal range also. He is now producing platlets all on his own, & all his bloodwork for this week looked great. They sent out lab work to test his immune system to see how well it is working so far. They are checking to see if he has T-cells yet, which at this point he might not, but the way he is going it wouldnt surprise me. The only real concern right now, other than keeping him healthy & away from anyone that is sick, is his weight. He is still not eating as much as he should be yet and is pretty much burning all the calories he eats. He isnt losing any weight, but he isnt gaining any either, which of course a baby his age should be gaining every week. He is very active though & just keeps growing longer. Developmentally he is still about a month behind, but in the past week has really started catching up. He is rolling over, but hates being on his tummy. He is starting to grab at things & likes his toys. He is just a joy, & I am so blessed to be able to stay home & play w/ him all day.
The power of everyones prayer is truly amazing!!! I am so much closer to god since this has all happened. Who knows, maybe that was his plan!!

Thursday October 14,2009

Today is 60 days post transplant!!!! Can you believe it. Things are going really well. As they say no news is good news, I have nothing exciting to tell you. Tucker goes to the doctors at CHOP every Tuesday, & so far we have had all good reports.
Tucker is really growing. H eis now about 13 lbs, & about 25" long. So he is long & skinny, which is what we expected since his dad is the same. He is a wonderful baby!!

Sunday, October 4, 2009

Its been a few days since I updated & I have very good news!! We went to Philly on Thursday & Tucker got his central line out!! Yea!!! Everything went really well, & he just has a little spot w/ steri strips on. He will have a little scar that matches the other one that he pulled out. So now all he has left is his ng tube in his nose that we use for all his meds. He is just doing so amazingly well.
We go to Philly on Tuesday for his weekly checkup. He gets his IVIG that day also which he gets every 2 weeks. That is an immune booster that he will be getting for another few months.
Not much other exciting things to tell. I know I say it every entry but Tucker is just the happiest baby ever!!! We definately have been blessed. He is the joy & light of our house.
He is als now a STEELERS fan!!!

Wednesday September 30,2009

We had a Drs appt at CHOP yesterday & we were very excited after the appt. Tucker had his bloodwork done & we were expecting him to need platlets. As I said before the platlets are the last thing to come back after transplant. Anything under 20 he would need them, normal is anywhere between 100-400. So his count last Thursday was 25 so I was thinking he would need them. The bloodwork came back & his platlets are at 65!!!! We were so excited, even the Dr was surprised. His little body is making them!! That means that he gets his central line out, which I am even more excited about!! We go back to Philly tomorrow to get the line out. He does have to be sedated for that, so please say extra prayers tonight, but i'm sure he will do just fine.
We have really settled into a good schedule & Tucker is doing so well being home. He is growing so big. At 3 months old he is now wearing 6-9mths clothes. He is rolling over, but he gets mad cause he gets stuck. His head is still a little weak, but getting stronger every day. He smiles all the time, & coos & makes wonderful little baby sounds. He is just a joy to have!!

Sunday September 27,2009

Today was such a relaxing day at home. Tucker loves being home!! We watched Nascar & the Steelers play ( even tho they lost). I am pretty sure that we have the happiest baby ever. He is so good.
We are really getting into a routine now. Tucker still has lots of meds he takes twice a day, & we have to care for his central line, & sometimes getting him to eat is still a bit of a chore. We also got great news on Friday. His Nurse Practioner called on Friday to tell us that his blood is now 99% donor, which is fantastic!!! Tucker has another appointment on Tuesday & hopefully he wont need platlets. Then they will consider taking out the central line. That will be such a relief. We still have quite a ways to go yet for him to be called "cured", but I do believe we are thru the worst, & now its up to his body to heel & us to keep him healthy.