6/8 - Leo Recovering From an Illness - Sammie Having Fun

Leo has had a rough week but seems to be on the road to recovery. The first two weeks that Leo was home he did really well. It made it seem like taking care of him at home was going to be easy. That all changed just after Kate posted the last blog entry. Last week Leo had a series of Dr. appointments and we think he may have caught something from going in and out of all the offices.

 

We first noticed that when we had to suction him and what came out wasn't the clear, normal color it is supposed to be. Then it was a week of destating (setting off the oxygen & heart rate monitor). Several times, we even had to use oxygen. There were several scary moments but all of the experience we have had helped us get through it. Looking back, it felt like the same situation that put Leo back in hospital back in February. There were some days he would cough so much that it would just wear him out to the point where he would stop breathing. A gentle little shake or a puff of oxygen usually would get Leo back to where he needed to be.

 

We (mostly Kate) also spend the past week training two new nurses. One for night shifts and one part time nurse to cover every other Saturday. Kate and I have had to stay up with the new night nurse until she is comfortable with all of Leo's care so hopefully this means we can sleep most nights going forward.

 

Kate mentioned in her last post that we are closer to confirming a diagnosis for Leo. We have read many articles over the past several months trying to come up with our own diagnosis before we heard back from the University of Washington. The links below are an example of some of the medical journals that we have been reading. In them, you can read about others who have the condition. Leo seems to be on the more extreme end of the spectrum compared to some of the individuals.
http://omim.org/entry/614688
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3123550/

To explain what is going on in Leo's brain compared to a normal brain, the image on the left is of Leo's brain and I circled the brainstem and cerebellum. The image on the right is a "normal" MRI of an infant. Comparing the two images, it hard to believe that such a little difference presents so many challenges for Leo.

 

To end on a more positive note, Sammie has had a much different experience over the past week. She got to go to Grady's fun park with Papa & Nana, HeyDays, and even helped Dad plant some trees.

 

 

Arggg! 

 

Sammie and Kate riding the roller coaster at HeyDays.

 

We even got our two favorite books signed by a famous Heyworth Author!

 

And I finally got around to planting trees in my backyard, something I have been talking about for years. Sammie and I went to home depot to get them and even the race car kart couldn't keep her from getting bored.