06/27/10 Holding Strong

The last few weeks have gone well. Eli continues to grow stronger every day. Nights are still rough but we're managing. I even got away to Hawaii on a business trip for 4 fabulous nights of uninterrupted sleep!

About 2 weeks ago we took Eli in to see a neurologist that was recommended to us by Dr. Shlafer. We were looking for a couple things. First, did we miss anything with the neurological workup Eli received at Seattle Children's and second, is there anything we can be doing right now to make sure Eli has the best chance to live a normal life as he grows up. There were two poignant moments for me during the visit with the neurologist. The first came when the neurologist was looking over Eli's records from Seattle Children's and noted that we had a very thorough workup and the doctor then mentioned how frustrating it must be to have such a pronounced case of hypotonia and no answers. In cases with pronounced hypotonia at birth there's usually a fairly significant underlying cause. For me, that just underlined the fact that Eli has some significant issues and challenges to overcome. The other moment was when Patricia asked the neurologist if he thought Eli would ever walk. I've never even considered the fact that Eli might not be able to walk but it's a possibility. We simply don't know what to expect at this point. We just have to keep praying and hoping that someday Eli outgrows whatever is wrong with him so he can live a fairly normal life.

Over the last couple weeks we've also had some issues with Eli's G-tube, specifically, the skin underneath and around where the tube comes out of his belly looks inflamed and possibly infected. Patricia has been cleaning it daily but it just doesn't look right. We took Eli in to the pediatrician and he said it looked ok so we're not sure. He told us to put some of the antibiotic rub on it daily but other than that it looked fairly normal. I still think it looks funny so we're going to ask at Eli's next clinic visit which is coming up in a week. In the meanwhile we're watching it close to make sure it doesn't start to look any worse.

On the positive side of things, Eli continues to get bigger and louder. He's making more baby sounds now and he isn't shy about letting us know when he needs food or if he isn't feeling well. He even started arching and trying to roll over when he's on the floor. I think he's really close to rolling over but I haven't seen him make the flop yet. Within the next week or two we expect he'll start doing it regularly so we're very encouraged by this progress. We also had some interaction with the Little Red Schoolhouse program sponsored by Washington State which provides physical therapy to children who are developmentally delayed.

Overall we're still watching and waiting. The boys love hanging out with Eli and Eli is especially responsive to Ian. Ian has such a gentle loving way about him and he really dotes on his littlest brother. Too bad that doesn't hold true for how he treats Obie... Ian loves to get down on the ground with Eli and he spends a lot of time talking to him and checking him out. Eli in turn stares at Ian and more recently Eli has started to babble and coo at him. It's been great to see the progress and the family coming together.

06/06/10 Overdue Update

My intent was to do weekly updates but there hasn't been a lot to report on. Patricia reminded me that we have a lot of people following the blog and even the little things are important so I figured it was time to post something again.

Eli has been home now for a while and he is still growing and doing well. As Eli has grown he has become a little stronger and a little healthier but we still run into issues now and then. For example, Eli was making some very frightening noises over the last couple weeks. When he inhales its sounds like his throat is collapsing and he is trying to suck air through a collapsed airway. The sound is fairly loud and can only be described as a cross between gasping and choking.

It just so happens that we had a swallow study scheduled last week so we decided to have the pulmonologist look at Eli to see if we could determine what was going on with the noises. Patricia took Eli down to the hospital and between the swallow study, the visit with the pulmonologist, and the lab she was at the hospital all day.

The swallow study went well. Eli has been progressing steadily in terms of his ability to swallow and handle fluids. They cleared us to increase his feedings by the bottle and subsequently he has taken a few of his feedings entirely by bottle. This is a big step forward for us. He isn't to the point where he can take all of his feedings during the day by bottle but just the fact that he is taking an entire feed now and then is a big step. We are still feeding Eli every 3 hours. We were also cleared to start him on some rice cereal. We'll start on some solids in the next month or so.

The meeting with the pulmonologist went well too. After examining Eli and listening to the noise he is making the pulmonologist thinks it's simply a matter of Eli getting bigger and having some floppy vocal cords. If you've been around any infants you know they can make all kinds of strange and startling noises but after a while you get used to them. I don't think I'll ever get used to the sounds Eli makes.

Eli's lab work came back relatively clean as well. His CO2 was in the low 50's and his bicarbonate was in the normal to normal high range. Everything looked pretty normal with one exception. Eli had a dangerously high level of potassium in his blood. We were told that this is fairly common if a blood vessel is broken during the blood draw. Basically it's a false positive. They asked us to bring Eli back the next day for another blood draw. The result of that blood draw was perfectly normal so the assumption that the potassium was related to a broken blood vessel must have been correct.

As of this weekend we're still progressing. We've been in contact with some early development intervention professionals. They will come evaluate Eli and work with us to make sure Eli has the support he needs to catch up with his development. This is a state funded program available for children who are deemed to have developmental delays of 20% or greater. Since Eli has a feeding tube and is taking the majority of his feeds through the feeding tube he automatically qualifies. We've also scheduled an appointment with a neurologist outside of the hospital network. He was recommended by our pediatrician and we're going to have him review Eli's case and examine Eli to give us a second opinion. We want to make sure we're not missing something and we want to make sure we're still pushing for a diagnosis.

Finally, as of this weekend, we think Eli is starting to make some normal baby noises like cooing. He has been having more and more alert and awake time and he will sit and stare at his big brothers while they are running around acting crazy. Both Ian and Obie absolutely love their little brother but they are very rambunctious and they need to be reminded to be careful around their little brother.

For all the positive things going on we're still having a lot of issues with sleep. Nights are not the same in our house. Eli continues to struggle with his BiPAP mask and he requires a lot of interaction at night. Patricia has handled almost all of this interaction. Obie has been struggling a little getting used to having a younger sibling in the house and I think that's come out at night. He wants to be snuggled to sleep most nights and almost always by Mom who is busy trying to deal with Eli. Between Eli and Obie and having them wake up in the middle of the night, sometimes several times, we don't get a lot of good sleep. There have been several nights where we've had less than 3 hours of sleep and those are tough especially if it's on a work night. Thankfully Ian has been steady when it comes to sleep. He goes to bed at bed time and he wakes up around the same time every morning. We've had limited issues with Ian related to bed wetting but most of those challenges are behind us now. We're dealing with the lack of sleep and we're taking every day in stride. Overall it's been worth the struggle because Eli is home and progressing.

In a broader sense we're watching Eli grow and we're working to prevent future developmental issues but it's largely a waiting game at this point. We continue to pray for strength, patience, and healing. The love and support everyone has shown us has been absolutely amazing and we want you all to know how much we appreciate it. I couldn't imagine going through this process without all the help, love, and support we've received.