Pages

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.

Thursday, May 30, 2013

Puuulllleeeaassseee can I hold May???

When you are as yummy as this little girl you tend to have everyone wanting to nuzzle you!!! It is not super often that a doctors/specialists office calls me to set up an appointment. The pulmonologist that our pediatrician recommended called for that reason, then I was totally bummed to find out we couldn't see her after all because she doesn't accept our insurance. So I guess I will be making the call. I think this lung business is getting to be old. I called our ped the other day thinking we could send all of our equipment back.. Only to have her need it again. I am thankful we had it on hand. She shudders when she breaths, retracts, and turns lovely colors. I almost think it has to do with the weather. Rainy weather= bad breathing days. I also found out I was administering her inhalers wrong. Well not wrong, just not enough medicine. The things you learn. 

Wednesday, May 29, 2013

Evolution of MayLee's Hemangioma


Two weeks old

Three weeks old

Five weeks old

Seven weeks old

Ten weeks old

15 weeks old

17 weeks old


Today- or 19 weeks old 







Tuesday, May 28, 2013

Big trouble

Four little busy people making mud messes... Found these guys in the middle of this mess... 
 
 
 

It's a good thing they wash...
Posted by Picasa

MayLee's big update

May had her MRI last Friday. I thought she was doing really well health wise until the nurse put the pulse oximeter on and she was Satting in the low 80's... Luckily after talking with the doctor and giving her Flovent and Albuterol, which I chucked in the diaper bag last minute her lungs opened up and they decided to proceed. With a caution that she may have to be admitted for observation if her sats stayed low. Once she started getting happy gas she jumped up to perfect. That pretty much confirmed some Reactive Airway disease. Which is something we monitor closely but hopefully she grows out of. It is basically asthma but you can't give a baby this small a diagnosis like asthma because more than likely they grow out of it. She did well during the procedure. Waking up was not fun. She felt very weird so she just cried and cried. Her IV leaked so we took it out and I just nursed her. She calmed only for a little snack and then cried some more. The doc gave her two big puffs of Albuterol after she woke up so her sats stayed happy and she no longer needed oxygen so we were able to be discharged. I put on her pj's and stuck her in the sling and she fell right to sleep. She was so good.. We all came home and had big naps... 

Today we met with the neurosurgeon. MayLee's tethered spine is very impressive. It is a marvel that she is doing as well as she is. She is tethered by a fatty filum that is pretty large. Her spine is also tethered so low that it is at the very end. We don't think that her hemangioma and tethered cord are related. That is one thing to look and be mindful of during surgery. He won't remove the hemangioma at all since it will eventually go away later in life. They will be creating scar tissue which may cause her spine to retether. But it is better to do this all now so that she doesn't loose feeling in her feet and also become incontinent. It was lucky we found this early before those things happened. It's all going to be a little longer term/life long than we thought. 

Scheduling just called and we set her surgery up for July 17th.... 

Okay this is on!!! 

Monday, May 20, 2013

YW and YM walk to the temple

I just got called to serve in the Young Women's organization. I am so excited and lucky. This is one of my favorite places to be in the church. I know I say that about every calling.... Really though... Hurray! Every now and then I want to post some of the neat things I get to do. I am the secretary so I get to float around to every group. Last week was a combined activity and our youth walked the 6.9 miles from our church to the Oquirrh Mountain temple. First of all isn't it cool we live so close? Our youth didn't complain one bit. We even had a special person in mind as we walked that day ( and wore pink). One of our girls was in an accident that required that her mouth be wired shut in order for her broken jaw to heal. Pink is her favorite color so we all wore it for her!!! When we all made it to the temple there is such a feeling of reverence and peace. We know that only good things happen here and we love having that good feeling with us. Even outside on the beautiful grounds. I am pretty sure we have the best group of youth ever!


 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Posted by Picasa

Baby Shower

My little brother and his wife had their first baby.. She is such a dolly. I am so excited for May to have a cousin just her age. I have such sweet memories of spending time with my cousins and love them so much. We don't get to spend nearly enough time together. Some have gone to school, some have become amazing mothers and fathers, some have developed their talents and careers. They just amaze me. So for May to have a little buddy is so exciting. Ry, Alex, and Eden are so lucky to already have such fun cousins. Ry and her Grace could be stitched at the hip and have been called twins on multiple occasions. Munch and Gator play so great with Arli and Wells... I just love seeing these cute little relationships. Hurray for cousins!!! We threw a shower to celebrate our newest addition... With lots of yummy things to eat and lots of chatting. It is hard to determine if baby Jenivee looks like her mommy or daddy? I think a great combo of both. Chaison is learning to be great dad. He has a great example so if he gets in a bind he knows who to call. It is so cute to see him with his little daughter. I am pretty sure she will have him wrapped around her finger in no time, if he isn't already......


 
 
 
 
 
 
 
 
 
 
Posted by Picasa

Builder Alex

At the school they have an award each month. This month was determination. Alex was chosen to be the builder because he showed determination more than any other student in his class. Because Alex had his big Cardio appointment on this day. Daddy and Papa came early to see the principal present the award to Alex. They must have gotten confused becuase they did it while we were all standing in the hall waiting for them. Such a bummer that we couldn't even get a photo with the principle as he was dealing with another student. So we were just proud for our boy!
 
 
We have tried to teach Alex that we don't say "I can't" you just say "I will try" Way to go buddy! 
Posted by Picasa