Monday, November 29, 2010

I cannot believe it has been several months since our last post. It has been a very busy time for us. Some good and some difficult things have happened.

In August, after Jonah's multiple surgeries at the Madera children's hospital we transferred Jonah immediately up to Cedars Sinai. Within a week or two of this last posting we found ourselves back, yet again, in the emergency room at Cedars Sinai. Jonah's shunt was over draining and they took him in to the PICU for observation until his surgery the following morning. I immediately liked the new neurosurgeon, Dr. Danielpour. Not only is he very intelligent and talented but he has amazing people skills, something that was seriously lacking in our former neurosurgeon. Dr. Danielpour said they would be going in to check the shunt, make an adjustment and also attempt a ventriculostomy. He said if they were able to place a catheter between the third and fourth ventricles this could assist with Jonah's CSF drainage and possible some day take place of a shunt. Can you imagine Jonah being shunt free? He did say that the ventriculostomy would only be a 50/50 likelihood of actually taking place of a shunt but the potential is obviously worth pursuing.

After the surgery, Jonah spent another week in recovery with a small set back as they continued to find that perfect pressure adjustment for his valve. Finally, finally toward the first of September we were discharged only to turn around and return that night to the ER because Jonah arrived home vomiting. The second trip back was much shorter and after a few days of final adjustments we were sent home. We did make one more visit back to the ER two weeks later as Jonah was experiencing a great deal of agitation and sleeplessness. It turned out that the CT scan showed a massive sinus infection which was causing Jonah's troubles. Thank goodness they were able to send us home.

Soon thereafter, we had Jonah's IEP. We made it well known throughout the district that we were seeking legal advice and would pursue things to fair trial if they did not come to the IEP prepared to provide Jonah the services he required. I am happy to say that the IEP went well and Jonah started home visits the first of October. He is currently receiving speech and OT at home as well as vision and goes to a CCS state run office for physical therapy.

In addition, we continue private therapy for Jonah and he is averaging 6 visits a week of just private therapy plus our home school, etc. We are very, very busy.

Noah started a speech preschool three times a week at the local elementary school. He gets to ride the bus to school and back, they come to our front door to pick him up and he is more excited about the bus ride then about school itself. He is such a little boy and loves adventure.

We also were able to get a new, adapted Honda van for Jonah. What a blessing! The local state regional center paid for the very expensive adaption which left us with only the cost of the van to cover. It was a huge answer to prayers.

Overall, we have felt very blessed this past fall...even with all of Jonah's health challenges the Lord has always provided in many, many ways. We are thankful for our boys, thankful to still have our Jonah with us and thankful that we are together as a family.

We enjoyed our Thanksgiving with Uncle Coy and his family. It was the first time his girls and wife saw the boys. We are now in San Diego enjoying a vacation with Grandma and Grandpa Hanna.

We are grateful for all we have learned this past year and hope the Lord will continue to bless and be with our family as this year ends and a new one begins.

Merry Christmas everyone. We love each of you and thank you for your continual love and support.