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Friday, July 24, 2009

Thursday Clinics

Its been a quiet week....Eli left this past Sunday. Mom called me about halfway to Midland and said that Eli started crying for us. I talked to him on the phone and told him that his Grandma would bring him back this next weekend. So, he'll be staying hopefully until we get to go back to Midland. He was initially going to start going to school (St Ann's), but after much contemplation, we decided to wait another year. It'll be better next year when we are all settled back at home. Eli is cursed for being born in September, so he'll have to start school later than he really should. So anyways, that's what went on with Eli this week.

Isaac on the other hand...is still doing well here at home with us. I've been having to stay a little far away from him for the past couple of days (stomach bug!..ugh). He had his weekly clinic today, and other than the poking for bloodwork, everything went well. Who likes to see their kids getting poked? All his levels are so far where they want them, so no new changes to medications except for continual weaning of his narcotics. He's almost off of them completely!

We're so ready to come home. Nope, no talk of when that will be, but we are hoping to get things ready for him earlier than later. Mom is bringing up the carpet and setting laminate wood (faux) flooring in Isaac's/Eli's room and possibly the living area. Our hope was to get the whole house done sometime in the near future but we'll start out with the carpeted areas. We're also thinking about getting our total AC replaced or adding some components to it to get the air cleaner and filtered in our house. I'm not a professional in that area so we have to read up on it a little more and try to get some estimates. But the reason why I'm putting this info up on here is to get some opinions. I'd like to know if anyone has heard of the Perfect 16 System? I still have a lot to read up on it, but I figured I might get some comments or opinions on what you've heard about it. Our hopes were also to get our bedroom (add on from previous owners) ducted and added to the rest of the house, so we'll get quotes for that and see about getting it specially filtered. So, if any of you know of a system that does that or about this system, please let me know your experiences. Thanks all!

Today marks an exceptional day for us. Isaac started playing with his car seat toy. He doesn't know how to press the buttons to make the music go off, but he finally started batting at it. We've been trying to get him to do that since we brought him home. We've also been working on his feeding. He's still not used to having anything in his mouth, so he gags quite a bit. I have to catch him when he's hungry. We started doing tastes of bananas. He seems to like it okay, but he gets a little tired of trying to swallow I think.

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Wednesday, July 15, 2009

Doing Phenomenal

Hi all. Yep, sorry for not updating in almost three weeks. Although, its not easy to know whether people are even reading the updates because there are not usually any comments made. But anyways, now I do know. Thanks to all of you who follow along Isaac's journey.

As you know, Isaac is home with us and he is a full time job (sometimes overtime). But well worth it! Eli is here also and helps me out (when he wants to). Isaac has to take 14 different medicines in a 24 hour period and some are even twice a day. Most medicines aren't long term but he'll still be on at least 5 or 6 lifetime medicines. So, you can imagine how busy I am. We've all got our routine all set up now. He had his first clinic appointment last Thursday, and although it was a long day, it went very well. Nothing much is new except for weaning some medications slowly. His new heart is functioning very well. They just have to get his immunosuppressants at therapeutic levels in his blood. As far as we've been told, the minimum that they have us staying in Houston is three months, but it all depends on how Isaac is doing on his medications. So, we're hoping mid-September (before Eli's 4th b-day) or early October. We can't wait to take him home and show him off. His vocal cords are getting stronger and stronger. We can definitely hear his cry. We've been continually working on his physical therapy. Because he was so used to being still and having his hands restrained by his head, it took awhile to get his muscles developed. He can now almost hold his own head up and has discovered that he can play with his hands. His personality is so cute already. He's already so spoiled. He knows that when he's crying, I'll pick him up and as soon as I do, he stops. What a pooper!

On another note, our family would like to thank all the companies involved with the Brisket/bake sale but especially EOG for generously putting the whole even together. I know some of our family probably took some pictures. EOG has sent me what they took and I was waiting for family to send me others. I haven't received anymore, so here is what we have. Again, thank yo so much. Our family is grateful for everyone who had a hand in it. May God Bless you all and repay you ten-fold. Love you all!




And here are some pictures of our wonderful days at home.











Sunday, July 5, 2009

Home Sweet Home

This was supposed to be his "going home" outfit, but right before we left, he got a dose of lasix and peed all over it.



Saying his final goodbyes from his hospital room in his car seat.



His new bed at home...awwww, so sweet.



Friday, July 3, 2009

ARE YOU READY TO GO HOME?

A question we were asked on Monday. Of course we are ready!!! Isaac's transplant doc said that Thursday would be the goal but would probably end up being Friday. So us and Isaac had to go for many tests and training before we could take him home to the apartment. Isaac had to have much bloodwork done, he had to have an ultrasound of his veins, an xray, a swallow study, and MRI, and a hearing test. The bloodwork was to check his medicine levels and the ultrasound came out fine showing no other clots. Since Isaac still has paralysis of his vocal cords, a swallow study was done to see what would be safe to give him by mouth. It turns out that we cannot give him thin liquids by mouth, but is safe with baby food or honey consistency liquid. So, we'll most likely not be able to practice with a bottle but we can practice with baby food. He passed the hearing test and the MRI was done to recheck the clot in his head (which looks like it is resolving). Ernest and I had training on administering his medicines and how to use his g-tube and pump. After his last cath procedure, the doctor also warned us that he would have to be on an injectible blood thinner. Ugghhh...we were dreading it....but we learned how to give him his shots two times a day. We was finished with everything by noon yesterday but we still could not get discharged because one of the medicine levels was too high, so we had to wait for his bloodwork this morning. My brother was able to bring Eli for the holiday weekend. He got here at 5 this morning and is here waiting patiently for the doctors to discharge us so he can "take his brother home." As soon as they give us any word of "discharged" we are out of here until next Thursday when Isaac will have his first clinic. We'll take many pictures and post later today. Pray for a safe 7 minute trip home.

A Dedication to the Angel that gave me my new heart!

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