other various sundries

Once again Elias’ blog has been unintentionally neglected. Tons of stuff going on with him right now, both medically and developmentally. We did get our IEP written for Elias to begin pre-school at home this fall. The doctors have said that it will be several years before they will likely seriously consider allowing him in a classroom, but there is the reality it may never happen at all. At home he will have physical, occupational, and speech therapies a few times a month through the schools. He will have an assistive technology person, who coincidently also happens to be a hearing impaired teacher and a pre-school teacher that will come in once a week. Between all those appointments, plus his other PT, OT, & SLP in addition to the therapies at Children’s that alone is going to keep us booked. Throw in the medical and we are in for a challenge. This IEP was rather straight forward and simple to put together. We are removing the cognitive and social elements from his education plan at this time as it is not appropriate for him at the moment. While we were initially surprised with how much service we were able to get, we have been warned to be cautiously optimistic that will remain that way. It has been strongly recommended that in the coming years we get a lawyer that specializes in this area to help with the process. There are advocates out there for parents, but a few trusted sources have said with Elias’ needs we need that extra notch to help oversight and push for his educational needs to be met. As with everything, despite some of the horrible tales, we are taking in everything with an open mind and filtering the lessons learned by us and others. Overall though it appears we are in a good school system for him and we feel positive about beginning this fall.

Medically, Elias is Elias. the good come with the bad and that is all you can hope for. He has had several episodes over the past 3 weeks where he has stopped breathing. It has been since March since we experienced this. He has been keeping us on our toes that is for sure. We are scrambling and cramming in appointments as Elias is having a list of surgeries next week. Why are we scrambling? because GI wanted to (back in March) move his already scheduled surgery up (originally set for June) sooner because of some issues they want to explore inside. It seems as though someone dropped the ball and if it had not been for us following up constantly, we’d still be waiting for a date. So now we are having the surgery about the same times as we would have had we let the airway team dictate. It has been a cluster and frustrating the lack of a plan GI has had with everything. But that is what we are use to and have learned that we much constantly follow up with almost all of his providers for things. It is amazing how much time that takes, which has been a major contributor to the blog being neglected. This round of surgeries has the typical airway bronchoscopies to assess his airway, an GI scope to help with some issues we are having in that area. He will have a cystogram and urethral dilation by urology. They will also be assessing his hypospadias and genitalia region for some potential corrective surgery plans. Finally there will be his annual bone marrow biopsy which checks for early signs of cancer and failure of the marrow among other useful info. There will also be a skin biopsy for a FA research project in New York. It will take a few weeks to hear back on the Bone Marrow results. We do not expect any surprises, but you can never be too cautious with FA. In the near future Elias will also have another MRI as well. We believe that about covers the surface of what is going on the past several unreported weeks. We will certainly try to do better.

Coughing – Monitoring For Changes

Well it is the beginning of a new week and as usual a busy one. Busy is good though, as long as it stays productive. Elias enjoyed his first Super Bowl at home. Last year of course we were in the hospital. We were not rooting for anyone in particular, just hoped for a good game and were not denied. Congratulations to the New Orleans Saints for their victory last night. Yesterday was not the best for Elias. We could tell almost from the moment he woke up in the morning that he was a little off. He has not been running a fever, but he has been coughing quite a bit. The previous few days have been rough as well with secretion issues, but yesterday we were not really being productive with the cough and clearing secretions to the trach. We actually gave him a dose of Atrovent for the first time in months it was so bad and constant. We also made the decision to keep him off the ventilator last night and run the cool mist into the trach instead. With the frequent and at times constant coughing the pressures in his airway are increased. In Elias case, as mentioned many times previously, pressure is negative. It is nights like these and of course when there is a diagnosed illness that we revert back to the cool mist to minimize those pressures. It proved to be the best decision as Elias has slept well through the night. No doubt, if he had been on the ventilator we would have been attending to endless alarms and probably frequent suctioning. He has been a bit flush and pale at times as well through the day and much less active than usual. Bless his heart though. Even when he feels bad he tries so hard to be playful and happy. Such a wonderful attitude. We are hoping that this is not the beginnings of something more serious, like a cold or upper respiratory infection. Thankfully, his secretions have been thin and clear, a positive sign. Typically, patient’s secretions will change color to yellow/brown and become thicker when something is brewing in the airway or lungs. We also have been watching his O2 sats (pulse ox) as they have been a little on the low side for what Elias, typically runs. We are happy to say that through the night they have slowly improved back to baseline. We will just continue to watch for any changes and hope that today is improved. We have been VERY fortunate this winter with the lack of “airway sickness” and the varies sundry forms it reveals itself. We truly feel the IVIG is a major part as to why.

Developmentally, Elias is beginning to want to “stand” (with our help of course) more. He is really getting good at pushing up from a bench sitting position to stand. We are currently working on getting him to lean on furniture while standing in an attempt to get him to the next phase of “cruising.” That of course is walking along furniture as a stabilizer. We are a ways from that of course, but it is something we have in our 6 month goal list. Elias was actually standing up leaning on the couch playing with toys for about 60 seconds without support of any kind. His physical therapist was impressed with what he was showing her and she gave us some ideas to encourage the activity more. He has not repeated the same success since that time a few days ago, but it does require his wobbly body to be in exactly the right positions to make it happen. The fact that he is wanting to place weight through his legs on his own more and more is the sign that he is working towards this. The part of all this that is so amazing to see is that look of pride on Elias’ face when he accomplishes something. It is so obvious and you can read his facial expressions and smile like a book when this happens. One of the truly magical parts of being a parent. We received some amazing feedback from the video we posted yesterday. Hopefully, you have had a chance to view it. It’s always great to hear the outside perspective. People have noted things that we overlooked, positive things mind you, but when you watch something everyday it can become clouded unintentionally. We are hoping that our success with this video recording it means that Elias is becoming less distracted by the camera which means more video opportunities.

A Little Insight To Carry Us Through The Weekend

This afternoon we spoke with Elias' surgeon very briefly. We asked him how the conquest of the world was coming (decision on what to do with Elias) and he took a deep breath and said, "let's sit down on Monday for an informal meeting." He did mention that he was leaning towards a tracheostomy but he did not sound as though he was certain about that thought. That's OK, we understand the difficulty & challenge Elias has posed. Just knowing what some of the thoughts are helps get us through this extremely difficult and anxious waiting period.

The NICU attending doctor came in also to talk with us. He asked if we had spoken with the surgeon and orthopedics (more on that to follow). He also mentioned that one thought he has is to do a gastrostomy (also referred to as G-tube). This is a surgical opening into the stomach where a feeding tube is placed. We did not get into a lot of details about this with him, but his main reason for wanting this procedure is it will potentially allow Elias to come home sooner. He would get the feeding therapy as an outpatient. Without the g-tube he would need to be hospitalized until he masters full feeds from a bottle and that can potentially take months. We will go more into the gastrostomy when they have decided for sure if it is right for Elias.

Orthopedics was asked to be consulted...oh about a month ago. Well, yesterday a doctor from that unit came to consult Elias. Of course he his a lower body specialist, but he is the doctor that must consult first and then refer the appropriate doctor. Oh the wonders of the medical political bureaucracy!! The issue is the doctor comes from another hospital within the University's Medical system. We did not know this until yesterday. Well, to make a long story short, several emails have been exchanged between this ortho and the NICU attending. Our contact information was given to them and we are now awaiting follow-up for a hand specialist to look at Elias' hands and help occupational therapy properly splint them for optimum success.

Speaking of occupational therapy, Elias is getting great reviews from his therapist as well as physical therapy. They say he is tracking very well, both visually and audibly. Grandma O, you'll be happy to know they used the toy you brought Elias in one of his sessions and he had a great time with it. His level of engaging stimulus is extremely positive too. He really enjoys his therapy sessions, rarely getting fussy or upset. They are a really wonderful group to work with, always very patient and willing to teach. They love our level of involvement and our positive outlook. We look forward to continuing with them even after Elias comes home. We have added a few links to Elias' Helpful link section for tracheomalacia and gastrostomy. As always please do not hesitate to ask questions or tell us about concerns you have. It honestly helps to be interactive about all of these things.

We will be working on getting the photos and video from today posted a little later tonight. We also want to thank everyone for the phone calls, emails, and comments of support this week. It helped us get through this very rough week more than you'll ever realize.