March 14, 2011

Monday 3/14/2011

It seems like its been such a long time since I wrote. The passing of Ellie Prince hit me hard. Ellie was born just about six weeks after Ethan and soon after her diagnosis her mom and I "met" through the online parent group. I had hoped and prayed that Ellie and Ethan would be on this PBD journey together for a long time, but that wasn't in God's plan. Little Ellie is now healed of this disorder and in the presence of the ultimate physician - Jesus Christ. Please continue to pray for the Prince family. It is my prayer that they will find the love and comfort only the Lord can provide.

Last week was a busy, yet productive one, for us. On Monday, March 7th we had Ethan's six month review of his Early Intervention (EI) services. It is so hard to believe that he is nearly 8 months old and we've known about this horrible disorder for over six months. I am so thankful though that despite everything Ethan is doing well.

At the meeting a few changes were made.
-Ethan is going to begin seeing the PT week. This is great because we are still working on mastering sitting. He can tripod/prop sit for up to a minute but can't sit without the support of his arms yet. Plus, today we got his helmet, so now that his head is heavier, he may need some extra help as he adjusts to the helmet and doing everything with it. I am really hoping that by nine months Ethan will be sitting independently and that we'll begin to work on crawling.
-Ethan will see the Hearing Specialist each week. With his level of hearing loss this will be good because she will be able to help us continue to work with him on listening skills and with learning how to vocalize. In many ways she is doing similar activities with Ethan as the Speech Language Pathologist.
-Ethan will begin OT every other week beginning in April. The OT will help Ethan with fine motor skills. This is going to be very important especially as we start to look at helping him with feeding skills - holding his own bottle, using a sippy cup, feeding himself finger foods, etc. She will also address sensory issues - this may be particularly beneficial because it seems that most PBD kids have sensory issues.
-Ethan will see the Vision Specialist every other week. I am very excited about this. The vision specialist is going to work with us to help us learn how help Ethan utilize the vision he has plus there are actually some activities that we can do that may improve some of his vision! How awesome is that!
-Ethan will continue to see the Dietitian and Speech Language Pathologist once a month.

I feel so blessed because Ethan has a great EI team. Unfortunately, as I've talked with other mom's this isn't always the case. My heart breaks when these friends share with me the struggles they are having to just get the proper services for their kids. Two more of my PBD mommy friends has been have been having a very difficult time with their respective school districts. This just makes me so MAD!!! As a former teacher myself, I understand that the are so many factors that are involved in every situation, but these two situations are just ridiculous and in my opinion the schools are just in the wrong. Keep fighting my friends!

In addition to Ethan's EI six month review meeting last week he met with the Hearing Specialist, Dietitian, Vision Specialist and Speech Language Pathologist. It was a busy week. Our appointment with the Vision Specialist was a great one - she was thrilled to see how much functional vision Ethan has!

On Tuesday, Ethan and I got to go back to our Baby Talk group for the first time in ages. This is a great group and looked forward to returning. All the families there are really nice. It is great to have a "normal" activity to do each week together that doesn't involve doctors or therapists.

On Wednesday, Ethan and I had a meeting at our church about the new M.O.P.S. (Mothers of Pre-schoolers) group that we are forming. The new group is going to start meeting next month at our church, First Baptist Church in Mt. Zion. We are still finalizing the details, but I am very excited about this new group.

This morning Ethan got his helmet. FINALLY! As you know we've been working on this since before Thanksgiving! So far, Ethan is not impressed. This week will be a time of adjusting to the helmet and the amount of time he wears the helmet will gradually increase until next week he'll be wearing in 23 hours a day.

Afterwards we headed to Dr. Smith's office for a two week check-up following Ethan's battle with RSV. Dr. Smith said Ethan's lungs sounded CLEAR! Thank you for all of the continued prayers as we dealt with that nasty stuff. Keep your fingers crossed - maybe we'll be able to stay away from Dr. Smith's office until Ethan's 9 month well-child appointment in six weeks.

This afternoon Ethan will see the Hearing Specialist and Wednesday he'll see the PT.

Jeff and I are both looking forward to this weekend. We are going to be attending a conference for parents of children with hearing loss. I'm hoping to learn alot and although I recognize that Ethan has several other issues besides hearing loss I believe that the conference will still be beneficial.

And I am super excitd because this summer we are going to get to meet several other PBD families at the first annual Global Foundation for Peroxisomal Disorders Family/Medical Conference. I'm so excited!


Prayer Requests
-Please continue to pray for the Prince family and all of the families impacted by PBDs.
-Please continue to pray for the Lord to continue to work in Ethan. We feel that his current health is a real God thing and we will not stop praying and asking the Lord for healing.
-Please pray for the doctors and researchers who are working on medical interventions and treatments that could help our kids. I am a firm believer that the Lord often uses modern medicines as a way to heal. (It especially helps when you have a family doctor who is a Christian. :) We are so blessed because we know that Dr. Smith and so many of the staff are praying for our little man.)
-Please pray that Ethan would adjust to the helmet and that he wouldn't mind it. Please pray that his head would quickly adapt and correct. My prayer is that he would be able to have the helmet off by his first birthday (which is in about 4 1/2 months!)
-Please pray that Ethan will continue to make progress with the help of all of his therapists.
-Please pray for wisdom, guidance and patience as Jeff and I seek to be the best parents we can be for Ethan.
-Please pray that we will never forget that the Lord loves Ethan even more than we do!

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