Sunday, September 25, 2011

This Weeks Recap

It has been another busy week here. Tons of appointments in 3 days at Children's Hospital. On Monday we had to head into the FA Clinic for an unplanned visit because of Elias' central line. We noticed on Sunday night while changing the cap and dressing that there was some blood buildup (the beginning of a clot) just below the cap. This is very dangerous as a clot or air bubble in the line would travel directly into Elias' heart. Fortunately it was a  "simple fix." All things considered that is. We pushed some "super heparin" in the line to break the clot up. It sat in the line overnight and was withdrawn the next morning. The clot cleared and everyone was happy, breathing a sigh of relief. We need to ensure when we are inpatient and receiving medications through his line that the flushing is done in a pulsing fashion, rather than conservatively. Plus per protocol anytime they flush the line they draw back and pull "waste" blood to ensure the line integrity is functioning properly. Not a big deal, lesson learned and we will know to address this next time to prevent a repeat issue.

Tuesday morning we had a follow-up with Neurology. She was very pleased with the way Elias looked and acted in addition to the way he responded to her reflex tests. All positive signs that there was no lingering effects or damage to the brain from the latest seizure. We discussed the raising of dosage on the Keppra (seizure medication) and the rescue drugs. We also set a new threshold for when to call 911 for transport and admission. The goal is to obviously not be admitted every time he has a seizure. Hopefully the increased Keppra will prevent them, but should he have one the Versed (rescue med) should stop the seizure within a few minutes. Any seizure over 5 minutes will warrant a 911 call. The real question still remains, why? As with the breathing episodes, we may never know the answer. We are going to be seeing neurology much more frequently going forward, even without seizure activity to monitor him.

One bit of- we call it bad news but it really is what it is- in clinic they weighed Elias and he has lost weight :-( He was down to 8.1 kg from 8.4 kg which for those of us in America means he dropped under 18 pounds again. We are thinking it is from increased activity and mobility. He simply burning calories like mad. We are working on trying to get GI back on track with managing his feeds so that he can GROW! This is something that all his doctors keep saying will hopefully improve some of the ongoing problems, especially the airway. This is one of the issues associated with Fanconi Anemia, small stature, but Elias is even small by those standards. Our little joke has always been, Elias is not small he is fun size!

This week Elias also dove into his full preschool schedule here at home. As suspected things are going to be intensely active and busy. With the newest issue in the seizures that is only increasing the appointment load. After this week and finally meeting with all his teachers and therapist we are beginning to wonder if we should not have waited as we originally intended. We are having some issues with scheduling. Everyone seems to want to come on Tuesdays. We have 12 therapist between school and outside services to try and work in around appointments. It took some serious negotiating and rational arguments to attempt to gain some flexibility from everyone, but we are hoping things will begin to work out and settle in. The preschool teacher was wondering why she was part of the team this year. Not that she doesn't want to work with him, but where he is developmentally is making it challenging for her. Fortunately we do not have any specific IEP goals with her, but we agreed if we needed to cut back in anyway due to overload she would be a first to go this year. We are still positive but are really going to have to watch for contradicting methods and strategies between the services. We do not think many of the school therapist realized the intensity of the duplicating services. Which typically would have separate goals due to limitations on the school therapies focus to education based only. This year much of that has been removed to get him caught up, which was why we had the outside services and had planned on waiting a year. We will need those outside services in future years though to cover all Elias' needs. To cut them now would put him at risk of not being able to regain them later. It is a vicious circle that we knew from the beginning was going to be hectic and maybe even a bit frustrating. We have faced similar problems before and have always worked through them and this will be no different.

On the home front, Elias has been having fun. His infatuation with bubbles has become an obsession. He LOVES bubbles and wants them constantly. One really awesome effect is that he is trying to say bubble. Further proof the listening therapies are slowly but surely working. He says "buba" when he looks at them in the container we keep them in or when he grabs the bubble card to communicate. He has really been focused on gestural communication. He is getting quite effective with this method as well. He is really proving to everyone how bright he is, but his stubbornness is making progress a little slow building his "vocabulary" or repertoire of words with pictures, signs, and actions. Looking back on the last nine months Elias truly has come quite a long way though. We are proud of his progress and hard work.

Many of you have been asking about us and how we are doing? The past several months have been among the most stressful we have encountered so far in our journey. It has been physically exhausting and mentally draining. We manage as always, but sometimes we look back and ask ourselves, how did we do that? It is amazing how driven we can be when it comes to him. Sometimes we feel his smiles and laughter are an alternative energy source in itself and that is okay by us. It is completely amazing what you can do when necessary. As always we appreciate all the thoughts and prayers for our family and especially for Elias! He is a special little man and continues to capture hearts. We are very thankful for all of you and for everyday with him.

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