Elijah Update

It has been about 3 months since Elijah's Fontan. If you had seen him then, you would not even recognize him now. He is one happy dude. Although still on some pretty heavy meds, he is active and thriving. At his last doctor's appointment his pulse ox was 98% and he even had a cold. This is amazing for him. He is gaining a little weight and eating a ton. We have been swimming, gone to Disneyland, and rode the rides at Knotts Berry Farm. We are continuing to wean his meds and we hope to be off of most of them in the next three months. I have no doubt that we will continue to have our ups and downs when it comes to Elijah's health, but right we are in a great spot and we couldn't be happier.

Kindergarten

Noah is now in kindergarten!!! Where or where has the time gone? He is no longer a baby... no longer a toddler... he is now a boy. Wow.

Cardio Update

First let me say that Elijah is doing really, really well. Dr. Sklansky is watching him very closely but so far so good. He went for another cardio work up on Friday. His lungs continue to look clear even after going back to a full fat diet and weaning the Sildenafil. He has been getting bi-weekly xrays along with blood tests to measure his INR levels. He is on Warfarin, a very strong blood thinner, that must be monitored regularly. The plan at this point is to slowly continue to wean the medications over the next 6 months. He is still on three very potent diuretics. As of Friday, we are very, very slowing starting to wean one. Elijah has lost a substantial amount of weight and now wears 12-18 month clothing. We are trying to fatten him up and we continue to try to get him stronger.

As for his spirit, he has returned to the happy (and sometimes very demanding) three year old that we all know. Noah is much happier now that he has his brother back.  The two of them are the best of friends and he worst of enemies all at the same time. But no matter what, they want to be together.

I returned to work two weeks ago and Elijah went back to preschool. Noah attended a few days with him. Elijah is struggling with the transition to going to school without Noah. Noah will start kinder on Tuesday. Dion and I spent a large part of yesterday getting all of his school supplies and purchasing uniform shirts. I can't believe that my baby is going to "real" school. He is no longer a baby. I am so proud of him and at the same time, I would like time to stand still. It is moving way to fast. All of that to say, I am so very grateful to be here, in this moment, with my little family in tact. And not just in tact, but happy and thriving.

San Diego

Although we didn't have much of a summer, we decided to make the most of what we had! 

Having fun in Old Town. 

Legoland Fun

Making friends at the San Diego Zoo. 

Enjoying the Orange County Fair. 

Elijah got to feed a baby cow. 

Good old fashion fun in the pool. 

Finally Summer Fun!!!!

Brunch in Hermosa Beach. Cheers!

Checking out the ocean sites!

Love Auntie Lyndsey!

 

Travel Town never gets boring!

Riding the train!

Watching Noah at his swim lessons!

Cardio Follow-Up

Today was a good day. I have been looking forward to and yet dreading today. We had our follow-up appointment with Dr. Sklansky. I am all too familiar with the possibility of being readmitted. I know that one bad x-ray and we will be back at CHLA. But today was not that day. Today Elijah's x-ray was "excellent." Today Elijah was satting at 97 and he was pink. His echo results were positive and we are beginning to very, very slowly wean his medications. This will be a very long process, and it will probably take 6 months or so to complete. But it is a step in the right direction. 

Elijah has been so traumatized from the long hospital stay that I thought today's appointment would be horrible. I was completely wrong. Elijah handled all of the tests and x-rays like a pro. He never cried and he never fusssed. We will go back in two weeks to repeat today's tests. If that goes well, we will start to introduce Elijah to a more balanced diet. He has been steadily dropping weight and I don't think he is even on the growth chart anymore. He had been barely on the chart, but following his own growth curve. This is no longer the case. It is my hope that he will do well returning to his previously fatty diet and we will be able to put some weight on. He is so, so skinny. He is back into 18month clothing. Everything else just falls off of his little body.

As for his attitude and affect, that too has steadily improved. He has been playing with his brother and he has even had fits of giggles. Now that is a great sound. Baby giggles can make anyone happy. His energy level is still a little low, but he isn't eating a ton so that is to be expected. He is sleeping better, although I think we have only had one or two nights where he actually slept through the night. Things aren't perfect, but they are better. I have to remind myself that we are in a period of transition. Once we get past these hurdles, he will be stronger and healthier.

Adjustments

First let me say that I am so very grateful to be home. I am grateful for the diligent care that we received at CHLA. I am grateful for my husband and family and the incredible support that we got while at the hospital. I am grateful for all of the prayers and best wishes from everyone around the country. I am eternally grateful.

Elijah came home on Saturday. I think I expected him to adjust quickly and for things at home to normalize. That has not been the case. Elijah is traumatized. He won't allow anyone to look at his chest, let alone touch him. He wants to spend his entire day laying on top of either Dion or myself. He doesn't want to play or laugh. Noah is lost. Noah thought that once Elijah came home everything would go back to the way it was and Noah would have his playmate back. That has not been the case. Elijah has not wanted to play and my poor big boy has felt rejected. I try to explain to Noah that Elijah is still not quite feeling well and that he will play with Noah soon, but I don't think that is enough.

To add to that, Elijah is so incredibly weak. He sits on the floor and can't get up by himself. He is unable to climb on the couch by himself and he is very wobbly. I have to remind myself that he will get stronger. Elijah has spent almost a month in the hospital, two weeks of which he spent confined to a bed. It wasn't until he was fully stable, almost two weeks into our hospital stay, that he took his first walk. He has lost weight and continues to lose weight as he is restricted to a low fat/non fat diet. The poor kid doesn't even sleep peacefully. He wakes up continuously throughout the night.

I suppose this is all normal, but it wasn't what I expected. I expected a period of adjustment, but this is severe. My little guy has suffered more than any child should. And he is traumatized because of it. So again I remind myself that I am grateful, so very, very grateful. But I am also a little bit sad. I little sad for the innocence lost and the pain endured by such a little, sweet boy.