Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, April 14, 2008

The best birthday gift

Alex went to cardiology today!!! His x-ray looked great, he still has an elevated diaphragm, but who knows why that is still like that, and his echo showed that his clot is GONE!!! Dr. Su let us stop the Lovenox shots today which was a way cool thing...He still has pretty crappy function, he just will have that I guess... And he still has some mild to moderate leakage from the Tricuspid, at this point we won't do valve replacement we will just watch it... He also gets to come off of the high calorie count formula, a nice thing to mix formula like everyone else, and maybe get to have whole milk after his birthday...Tonight I called home health to come and pick up his concentrator(the thing that makes his oxygen) we will probably keep a couple of D tanks around just for good measure. We also ran into so many of our sweet friends at the hospital and it was nice to see those of you who were there.... I am sorry we didn't have time to see all of you! We just had a great day... Alex gets to be more normal everyday.. We couldn't ask for more! YEAHHHHH!


Quinney Family said...

Way to go Alex!!! We need to get the boys together so Alex can show Bryson that it is possible to live without oxygen. :) Oh, well there are worse things. We are so happy that he is making such great progress. Happy Birthday!!!

Pam said...

YAY Alex!!!! Brynn that is GrEaT news!!

Rhett has that icky Tricuspid Vavle leakage too. We just watch it and pray it doesn't get any worse.

I am glad that blood clot is gone. What a blessing.


Pam and Rhett

Andrea said...

Congratulations on all the progress!

Kenny & Michele Kingsford Family said...

That's great news!
Happy Birthday Alex!!!

Michele & Taryn

jenny said...

I am so happy for you guys. That is great news!! He is such a cutie! We can't wait to see all of you.

Simmons Family: said...

Such great news!! Hated the Lovenox shots... so glad you're done with those. Owen also has a leaky Tricupsid..blah. Oh.. and no more "creating" his formula, you can be like everyone else. I am so happy to hear that Alex is doing so well.


Mindurs said...

Yeah, I am glad your little guy is doing well and making major strides days away from his birthday! Can you believe our little guys will be 1 in a couple of days. Yikes!

Marie said...

Fun news for you Brynn! I didn't get a chance to really talk to you yesterday when you were here. I hope you don't mind that I blog-stalk you! Love your place.

Marie (front-desk)

Michele said...

I'm so bummed I missed your visit yesterday. I am so glad that Alex is doing better and that it is starting to feel like you have a 'normal' baby. How wonderful!!

Terry said...

YEA!!! Happy Birthday to Alex!!! I am so happy for you I can hardly stand it! He is so cute. But if he doesn't start sharing his smiles With me I might have to let Ruffus spend some time with him..... LYL

The Ridgway Family said...

I found your site through another heart baby. Our little girl Eden has a form of HLHS and T21. Shehas had one OHS to repair her severe coarctation and ban the PA. Her left ventricle is a little smaller than normal, but they are still confident that they can repair her VSD and ASD and keep her with a 2 ventricle heart. They also have to do some mitral valve repairs. Little Alex is absolutely gorgeous and it is so nice to see him doing so well. We have a heart friend in the PICU with us Cora that just had the Glenn last week and she also has a leaky tricuspid. I will tell her mom about you and it will brighten her day as she is a bit worried right now.
Love to Alex, Keisa
ps-we are still on Lovanox sots and she hates it when the nurse gives them Rightfully so!

Lance and Raegan said...

Yeah! No more shots, or pokes as we call them. Good job Alex!

The Andersens said...

that sounds like awesome news! it is very comforting to read blogs like this and know that there are better days out there somewhere!! it just will take patience to get to them i suppose. I'm so glad your little guy is improving so much. Your family is in our prayers every night. :)
love alysia andersen
(Grace's mom)
...the other Grace :)

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