February 8, 2013

Staying busy.

It's been a while since my last post. I wasn't feeling up to writing for a bit. Sometimes there are some pretty tough parts of this journey, and I was sort of in a funk for a while, but overall we've had a pretty good couple of weeks.

So what have we been up to since the neurology appointment 2 weeks ago?

Fri. 1/25
I took Ethan to the orthotist (Mr. Andy) who makes Ethan's AFOs for a check up and to see if it was time for a new pair. Ethan still has his first pair that he got back in September 2011. Ethan's current AFOs are now too small and too big all at the same time. His feet have grow and as he has grown taller his calves have thinned out, so they need to be longer through the foot and slimmer through the calf and ankle. So, it was just a quick appointment and Mr. Andy just needed to touch base with Ethan's PT and doctor to get the script. He also needed to call our insurance to see if they would play nice and cover them, because if not we were going to have to start working to see if Early Intervention would.

Mon. 1/28
Ethan's vision therapist, Joni, came to the house and finished up her latest assessment of Ethan and we talked alot about Ethan's functional vision, what to do for his eyes, and the transition to preschool at age 3. Overall, Ethan is using what vision he has really well. Joni's assessments put Ethan's vision skills (not necessarily a measure of his vision according to an eye doctor) at around 1 year of age -- which is right around where his cognitive skills are. So what does that mean? Joni explained that it is a "good" thing to see the vision and cognitive skills be at about the same level for Ethan, because that means he really is using what vision he has to the best of his ability -- if that makes any sense.We will be continuing to work to help him make as much improvement as possible, because only the Lord knows Ethan's full potential is. We learned a bit more about the botox procedure that the eye doctor had asked us to look into for Ethan, and we decided it isn't something that we are interested in at this point. Joni contacted several doctors and other individuals who work with children with visual impairments and mostly got mixed reviews, at best.  If at some point Ethan needs the eye muscle surgery, I believe that we will go down that route, instead of do the botox procedure. We also discussed the transition to school and I am glad that Joni is going to be able to attend Ethan's next IFSP meeting (on Feb. 14th) so she can help express the level of services and support that Ethan will need in regards to his vision with our school district.

Tue. 1/29
Ethan got to go back to STEPS! He had a blast and had a great day. All the therapists and teachers were so happy to get their hands on him since he had missed the previous two weeks of school due to being sick! In the evening I got to meet up with several ladies that I had taught with at Eisenhower -- I love these ladies. We come from different backgrounds, are different ages, and all at different places in our lives right now, but it doesn't matter -- the friendship and comradery is the same. I am so thankful that my friend Stephanie puts together these dinners out for us. It was an evening of great food (Olive Garden) and friends.

Wed. 1/30
Ethan's hearing therapist, Julie, came to the house and she was able to cut and fit Ethan's new earmolds! It was great! Ethan has been tolerating his hearing aids so much better. She worked on accessing some of his hearing skills, we talked about waiting to hear back from Early Intervention to see if they would cover his new more powerful hearing aids (since our insurance doesn't like paying for hearing aids and audiology services) and about the transition to school and the services and supports he is going to need.

Then, after she left we got a call from Mr. Andy's office, and found out that our insurance was going to play nice and going to pay at least 80% of Ethan's AFOs so we set up an appointment for casting for Monday, Feb. 4th.

Jeff emailed me from work to let me know that all of the claims from Ethan's MRI and ABR back in November had been processed and that we didn't owe anything! This was a HUGE PRAISE! Our audiologist had been working to get our insurance to play nice for several months, and it paid off, literally. Thank you Dr. Brittney!

And then, that evening, Ethan's Early Intervention Service Coordinator, Judy, called to let us know that the request for Ethan's new more powerful hearing aids had been approved! PRAISE THE LORD!

It was a GREAT day of answered prayers!

Thu. 1/31
Ethan got to go to STEPS again! He had another great day with all the teachers and therapists. I got to call Dr. Brittney and tell her she could go ahead and place the order for Ethan's hearing aids! In the afternoon Ethan's feeding therapist, Terri, came to the house. Ethan ate really well for her, although he was VERY tired. We are so glad that we have been able to increase his feeding therapy and I believe we are making some progress -- even if it is really slow.

Sat. 2/2
Jeff and I celebrated our 7 year wedding anniversary (we were married on February 4th) with an afternoon out while Ethan hung out with his grandparents. We went ice skating! We only lasted 45 minutes and weren't very good but we had a blast and only fell down once! Then we had an early supper at one of the downtown restaurants we had never been to. It was a great afternoon/early evening.


Sun. 2/3
The whole family got to go to church! Ethan and I hadn't been in forever because of being sick. Ethan and I stayed in the nursery (I'm glad we were well enough to go since it was "my turn" to be a helper in the nursery -- although Ms. Tammy could probably handle 100 kids in their by herself without breaking much of a sweat. We LOVE Ms. Tammy) during the morning worship service. Afterwards there was a fellowship meal followed by a short Bible Study. I really enjoy Winter Bible Study! Then, we all headed home and we took a family nap! In the evening Jeff and Ethan headed to his parent's house for food and the Super Bowl and I headed to the grocery store. It was wonderful -- there wasn't hardly anyone in the store. :) After I took all the groceries home and unpacked, I joined Jeff and Ethan and got to visit with his parents, Jeff's cousin, Sarah, and her little girl, Grace. Ethan and I headed home before the game was over, but we had a great time.

Mon. 2/4
Jeff took an early lunch so he could join us at Mr. Andy's office for Ethan's AFO casting. Ethan is not a fan of casting, but he did really well. He fussed and fought a bit, but Jeff held him in in his lap, and we were done without any real tears -- which is a success in my book. It will take a few weeks for the AFOs to be made, and they will give us a call to schedule a fitting once they are ready.

We finally got the test results back from the blood work Ethan had done before Christmas. Good and bad news. We'll do good news first -- Ethan's liver function panel is really good (for him), almost normal, and the best it has been in months. The bad -- the VLCFA levels/ratios are no longer trending in the "right direction."  What does this all mean? I emailed Dr. Braverman, the specialist in Canada, who like all of the PBD-ZSD specialists/researchers is amazing. At this time she sees no reason to change the dose and we will stay the current course -- she doesn't not believe there is any cause for alarm/concern about the Cystadane being harmful -- although we still don't know if it is "helping." She also suggested that we do some additional blood work next time to check other things such as - bile acid levels, pipecolic acid levels, and even the betaine levels, to see if the dose is achieving the same level/concentration that they have seen in the lab, etc. So, overall, while I would have been much happier to have seen the "slight trend of improvement" continue I am not completely discouraged and neither is Dr. Braverman from her email. She still sounds enthusiastic about the start of an official clinical trial this summer (as am I)  --- one thing we all know is that every PBD-ZSD kiddo is unique and so I am looking forward to other families having the opportunity to see if this medicine is a step in the right direction.

Tue. 2/5
Ethan got to go to STEPS again! I stayed for a bit and talked with therapists. The PT and I talked at great length about working to get Ethan to hold on to his walker so we can move away from using the sling. She shared that she had turned the walker around and that he would hold on to it some that way. I was glad that she was thinking outside of the box. :) Ethan had a great day but was very tired, since he had woken up at 5:30am, so his teacher sent me a text a little after 11am and I headed back to school to get him. By the time I got there Ethan must have gotten a second wind because he was fine and he did great for circle time, etc.

Wed. 2/6
No appointments today! But we had a visit from my Grandma Chambliss. :) Ethan played and visited with his Great Grandma. Ethan hadn't seen her since Christmas, but that didn't seem to matter, he was just fine. I could tell that both of them enjoyed their afternoon together. I know I enjoyed the visit.



When Jeff got home from work we tried to get Ethan to hold on to the walker. It worked! See video here. We are very excited about getting one "step" closer to Ethan walking. :)

Thu. 2/7
Ethan went to STEPS! He loves school. :) Ethan started to get boogie again and started having a bit of a cough :( but he had another great day. Jeff went to the Illini basketball game, thanks to a friend who gave him tickets, and was expecting Illinois to lose to #1 ranked Indiana, but then Illinois WON! It was a good day!



As you can see, we've been busy. If you had asked me almost 3 years ago when I was pregnant with Ethan and we decided that I would be a stay at home mom, at least for a few years, while Ethan and any future children were young, what my days would be like, I would have never imagined that they would like this!

In addition to all the appointments over the past two weeks I've stayed very busy with GFPD work,  this week we published the Winter 2013 newsletter -- a major labor of love for me. I am so proud and honored that I can volunteer my time and love to this organization which has become a second family to me. It feels good to be able to "do" something that makes a difference in the lives of families impacted by PBD-ZSD. I may not be able to "fix" my son, but if I can be used to help connect families and make this journey feel a little less lonely, I will.

I have also been continuing to work on the Illinois Mommies of Miracles website. I started this group, formally called Central Illinois Parents of Children with Special Needs, over a year ago. A few months ago we changed our name and expanded to being a state-wide group for mothers of children with special needs and/or complex medical conditions when we became officially affiliated with Mommies of Miracles, the world's largest support group for mothers of children with special needs. Although my founder/admin duties of this group are not as expansive as my duties as with GFPD, they help to keep me busy for sure. I am going to be representing Illinois Mommies of Miracles at the 7th Annual Special Needs Informational Fair in Peoria next month. Illinois Mommies of Miracles now connects more than 250 moms across the state and more are joining each week. It is my desire and goal that our website would become a real hub for information and connectedness for special needs families in Illinois.

I've also had the opportunity to get in some great mall walking with my friend Melissa K. Melissa's little boy Mason and Ethan are buddies, and attend STEPS together. We met back in 2010 when I was first starting the parent group that became Special Connections. :) Mason, his little brother Wyatt, and Ethan seem to mostly enjoy are walks as well.

The rest of the month looks nearly as busy. Hopefully, as long as Ethan doesn't get/stay sick, he'll be at STEPS both Tuesday and Thursday morning next week. On Thursday after STEPS we will have Ethan's first meeting to begin the transition to the public school system. It is probably going to be a very emotional meeting as we hear reports of where Ethan is developmentally according to his therapists assessments, hear what goals from six months ago he has and hasn't met, talk about goals for the next six months, and the transition from Early Intervention to the schools system. We would greatly appreciate your prayers as we begin this process so that we can find a way to get Ethan the services he needs for the Fall. Please pray for the teachers and other professionals who we will become Ethan's team at the school. Please pray that the transition this fall will be as smooth as possible for both Ethan and us and the beginning of a new chapter of opening more opportunities for Ethan to continue to learn, grow, and advance.

In March I am going to be taking part in a panel discussion along with three of my fellow special needs momma friends, at MOPS. While I am pretty much an open book about Ethan and how his diagnosis has changed our lives forever, I am now much more comfortable in the special needs world. I don't feel like I belong in the world of happy, healthy, typically developing children where no one has to worry about their child's terminal diagnosis, or has a schedule filled with therapist and doctor appointments, or "get" what live is like when you are the mom of a child with special needs --- but I am honored that we have been asked to come and share a glimpse of our lives with the ladies at MOPS. I expect it to be an emotional day, but I hope that it will also be an informative one and that the moms we speak to will be more educated and understanding of moms like me and our children. I also pray that they will be able to talk to and model to their children that children with special needs are not to be feared, ignored, teased, or made fun  -- that they too wonderful and beautiful creations of the Father and deserve love, kindness, compassion, friendship, encouragement and understanding -- just like the rest of us. I would appreciate your prayers for myself and my friends (Melissa K., Ramee L. and Allison B.) and for all of the ladies who will be in attendance.

It is only just the beginning of February, but we are ready for spring. I know I can't really complain about the winter we have been having, since I do live in Illinois and we should have snow on the ground, but I still long for warm weather, opening up the windows so we can fill the house with fresh spring air, and for us to be able to enjoy walks outside as a family again.

Please pray for that Ethan would stay as healthy as possible for the remainder of the winter and that he and I will continue to find ways to fight off the cabin fever. If we can all stay healthy we are hoping to get in some playdates with some of Ethan's friends that we've not had a chance to do since before Thanksgiving due to all of the germs/sickness.

Thank you for your continued support and prayers.






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