Friday, October 29, 2010

Visits, Meetings, and Day to Day

This week Katharine’s grandparents from Florida came to visit. This was the first time in several visits that Elias has not been in a hospital. Actually, he was home one other time, but was very sick and we ended up being admitted that day. It was great for them to see Elias thriving and happy oh, and walking all over the place! He had such a good time being a little ham and showing off. We are thankful for that opportunity.

Just a few items to quickly update everyone with. As we just mentioned Elias is officially a walker and quite good at the recovery and balance. He is loving his new found freedom. This past week we had our transitional meeting with the early intervention team and the public schools. Hard to believe we are already talking about school for Elias! He is slated to begin pre-school next fall, which is a half day program at the schools. Elias will more than likely be home-bound because of his continued immune suppression issues as well as the risk with his airway. The pulmonologist will evaluate again in the summer, but is not optimistic that status will change. At least it wasn’t a stern “NO!” Given that likelihood we discussed that with the school. They are able and prepared to send a teacher to our home for Elias in addition to continuing OT, PT, and Speech at a more limited level than we are receiving now. Their official assessment of him will be in February with a formal Individual Education Plan (IEP) meeting in April. It all sounds very accommodating and well supported. We have been told by several people that we are in a very good school district. If that holds true we will be very fortunate and blessed.

Elias has had some issues this week. He has tested positive for C-diff, so we are treating him with vancomycin again. Then we thought he was catching a cold, which would not be good for many reason. Fortunately it seems to have vanished as quickly as it appeared. We have started to see the suction need increase though. Last evening over a six hour period I suctioned him over thirty times. That is a lot of suctioning, but ‘tis the season! Last but certainly not least we are preparing for Elias next surgery very soon. This will close the colostomy! Hurray! We will be very happy to see this go away and it will be another huge step and change for Elias! We are hoping that things go well with the transition. We are not certain how long it will take for us to determine his continence success, but that is one concern that still exists. Tagged on to this surgery will be several other doctors doing various procedures. We appreciate all the thoughts and prayers in advance for a quick and smooth recovery for our strong little man as he endures yet another round of surgeries.

Friday, October 22, 2010

Apnea, MRI Results, & A New Concern

It has been a long rough day. Elias has stopped breathing 11 times in the past 26 hours. 10 of those have been since 2:30 this afternoon. He has needed to have supplemental oxygen to recover each time. Ironically, the neurologist called this afternoon to discuss the results of the MRI last week. There is no evidence of seizure activity or issues anatomically that would suggest a Central Apnea. That does not mean this still is not the case though. Of course, a cut and dry answer for Elias!? Never!!!!!!! The neurologist did ask a series of question about today's episodes to get some other information. She is pretty confident that this is not seizure related based on his interaction response during each episode. We also ironically just saw Pulmonary on Tuesday which I will update on that visit this weekend. Everyone agrees that this is not going to be an easy mystery and that handling this the way we have is still the best. It is just stressful, worrisome, and exhausting.
The only other finding to the MRI is a mass in the white matter of the left frontal lobe. While this type of thing could show up for a number of reasons, most of which are inconsequential, there is a need to treat it with respect. There is a small chance it could be a tumor of some sort. We will repeat the MRI in about 4 months. Even if this shows up again that doesn't always mean anything, but might prompt further testing. Even though she was downplaying this finding, it is a little unsettling. Just one more thing to be concerned about. It just never ends. We will keep everyone posted on this, but it will be a few months before we know anything more. Tonight we have other, more pressing concerns with Elias breathing.
At the time of this posting Elias is sleeping and on the ventilator. It is doing all the work though. We think he is so exhausted his body is allowing the vent to breathe for him. We had to raise the rate to 15 bpm to keep his Sats up but hopefully he will relax, breathe on his own when he can and be better tomorrow. Thank you all for you concerns, thoughts & prayers, especially for the newest issue.
By the way if you haven't seen it already, check out the Videos in the side bar to the right. There is a short new video of Elias walking and kinda babbling! It's adorable!
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Friday, October 15, 2010

MRI Scan

Elias had an MRI of the brain and cervical spine yesterday. Neurology ordered the scan to repeat a seizure protocol and rule out Chiari malformation. This was another attempt to discover the cause of Elias apnea episodes. The doctors want to compare it to the lastHigh Chair Playing MRI which was done in September of 2009 two days after the first appearance of Elias episodes. Elias did well through the scan and recovered quickly from the anesthesia. There was, as always, concerns that Elias would have to be admitted due to the risk associated with his sedation. His risk is much greater than most because of his airway issues. We have not received a report on the reading of this MRI yet and not certain when we will. If we have not heard anything by Monday we will call. No news is probably good news in this case though.

We had hoped to get the Functional-MRI as well yesterday, but it was not in the orders. We are not sure if it was because of scheduling or the neurologist that the red light was put on for this. The FMRI is the research scan we mentioned in Elias’ last ENT update. It was disappointing, but as we said before it was all for curiosity and not diagnostic. Another opportunity may present itself in the future.

Saturday, October 9, 2010

Two Years Ago – Reflecting on the Change

It was two years ago that we were told the results for Elias Fanconi Anemia test had come back positive. The one diagnosis we did not want. It was just one day after our third wedding anniversary. The doctors had so desperately pushed to have a meeting on October 8th, but by the grace of GOD our itinerary would not allow it. That would have placed a very somber cloud over an otherwise joyous day. It did take a little luster out of Elias’ initial homecoming just a week later. We have come a long way as a family and Elias, despite set backs has really started to flourish. Yesterday we celebrated our fifth wedding anniversary. The best gift of all was having Elias home with us. This was the first in which Elias had not been hospitalized during this time. What a blessing! This anniversary really gave us a chance to reflect and evaluate many things in our life. It has certainly been a rocky few years with many challenges. It has been these times that have made us appreciate our wedding vows to each other. It is important to live these words not just say them. To quote a friend, 

“Love is taking the good with the bad.. .in sickness and health to death do us apart. Why don't people understand that love is feast and famine? It isn't always about having what you want... it is about making it work because you are stronger together than apart”

This quote is ever so true! Our response and addition to that,

“We thank God for each other every day and know we could not go through all we are with Elias with any other. If you take the time to embrace each other during the storms you'll find that walking through the rain is easier than you think. And when the sun shines again you truly appreciate the beauty your love has to offer.”

While things have changed a great deal in the past few years one thing has and will remain constant, our love as a family. That is what pulls us through the tough times and has us rejoicing the wonderful ones. We try to look at tomorrow as something to look forward to and not something to dread. This week we have been particularly reminded of how devastating FA can be. Watching a child and his family endure the most difficult time while waiting for their child to pass any moment. There are several other FAmily’s that are also having difficult times with various issues. It has been a rough week on our community. These moments shape us should we desire them to or not. It is the reality of FA, one that if any of us could would abolish. Thank you all for your continued support, thoughts and prayers. We will continue to need it as we moved forward to face Elias new challenges. God Bless us all!

Wednesday, October 6, 2010

ENT Hearing Update

Animation of an MRI brain scan, starting at th...

 

We met with Elias ear focused ENT this morning. After discussing how Aural Rehab is going and the BAHA hearing aid he is in agreement that there is still little to no response. He is still leaning heavily towards a Central Hearing loss and wants to try and coordinate a research functional brain scan during Elias MRI next week. This new scan colors the portion of your brain than is functioning. While it won’t be diagnostic it will be interesting to see how the auditory portions of the brain respond. If nothing else it can show that everything is intact or if there is an area that the channel is “broken.” We agreed to do this because it will only take 10-15 minutes more during his MRI. The doctor also gave us some positive news overall though. He mentioned that children who are profoundly deaf will babble, but then go silent. Elias is increasing his babbling. While that does not mean he is hearing, it supports the central hearing loss theory. He said that he has high hopes for Elias and his ability to communicate and one day hear. It just may take many years. But we are on the right track and he feels like everything we are doing is exactly what Elias needs. That certainly made us feel a bit more positive about a subject that has plagued us for over 2 years. We will take even the tiniest bit of positive input for this and make it huge.

Please pray for FA patients around the world. There are several families who are really struggling with transplant related issues, cancers, and sadly loss of life. Particularly the Boggs family who’s son Nicholas is at home on hospice. This week has been rough on the FAmily. There have been several somber reminders of how unpredictable and wide range this disease be to harm its patients. Thank you all for your continued support, thoughts and prayers.

Sunday, October 3, 2010

A Few Items & Prayers Requested

Our apologies for the length of time between updates. Things have continued to remain very busy. It seems as though there is something constantly happening at the moment. Elias continues to do fairly well health-wise. He has had a few bumps and blips, but mostly from the change in weather.

We have been testing his blood sugar before feedings, during feeding, and one hour after feeding. This information is for GI as they try and figure out the symptoms Elias is exhibiting during feeds. He sweats, retches, coughs, and occasionally vomits. We will be submitting the results on Monday and I guess wait and see.

Elias continues to work on his walking. He is getting stronger and more consistent. He really enjoys it. He loves to walk back and forth between Mommy and Daddy. He gets so excited! We have also discovered that bubbles are very amusing to him. He loves trying chase and pop them. He enjoys them so much he usually gets mad when it is time to stop.

Our busy schedule will continue through October and even into November. Many weeks having as many as five or six appointments. In addition to those Elias also has an MRI upcoming as well as another set of surgeries. Please pray for Elias and the rest of the FA FAmily. There are a lot of families struggling right now with this disease. Many children and a few adults are really fighting some rough battles and are very sick. This disease affects patients in so many ways, it is horrible.

We appreciate you reading and following Elias' journey.