***May Madness***
2009

“May “....well this has been a busy month as we have been getting back into the swing of things ....things being ...”OUR LIFE”...and the busyness that it just is.... from being in the hospital last month...We have had....many meetings/appointments/evaluations/testing ect... ect....

To bad she's so shy!!!

We had a really nice visit with Great Uncle George (from Florida)this month and spent a Memorial Day(Sunday) cookout at Noni's house, the kids really enjoyed time with cousins and ALL the family...although Memorial day was not so great for Avery as he was having a rather tough weekend with feedings/gaging/coughing/vomiting ect....ect...and We spent Memorial Day(Monday ) @ Children's...as he apparently had caught conjunctivitis from someone...(not a family/friend)Cousin Lisa and her littler girl Lauren at the cookout!

My beautiful sister in law Carrie.....aka...Mrs.Austin!!!

Okay is Devynn teaching George or is George teaching Devynn...that is the question!?!...Also....Auntie Nancy and her nephew Tyler....

Seizures still have not been real good;still uncontrolled....However...God remains good ALL the time....Avery has been approved for nursing hours ..Praise God!!!..From Whom ALL blessing Flow!!
Although it has been an adjustment to have others in our house on a consistent bases ...We are so thankful for the wonderful addition to our family....Avery has adjusted very well; as has everyone else! It's nice to just have some extra support/hands with Avery's care.

The Boss.....

Avery's coughing/gaging/reflux are issues that have been increasing (as I mentioned above) although he is still doing some PO(feedings by mouth).However as the month goes on he actually has been put on continuous feeds and monitored continuously as his feedings /reflux/gagging become a HUGE issue.....We were so grateful for whatever smile we could get...because at times they were few and far between,due to his discomfort.
Are appointments this month were with GI(Tuesday)---who did not want to increase his reflux medication at this time and wanted me to keep with the continues feeds and slowly go back to our regular routine....which we did, however his intolerance became much worse and we ended up back on continuous with more issues than before.....I love love love OUR GI doctor...if you ever need one for your child I highly recommend her...she's Awesome!!! She looks at the whole person NOT just one individual issue! We talked about the possibly that his seizures and or medications could be impacting his feeding intolerance!

SLEEPING ON HIS FAVORITE PLACE....MOM!

Epilepsy(Tuesday)----ohh boy this visit made my head spin....it started with him asking me once again what Avery's seizures look like; and he proceeded to tell me that the medication he had been on is not medication that is affective for Avery's' seizures/epilepsy....May I remind you he was well aware of this treatment course....After leaving this appointment ...I went over and over in my head reports and conversations with Avery's neurologist/nurse regarding previous discussions about Avery's seizures/diagnoses and treatment plan....So needless to say I didn't get much sleep that night !...”Trust In the Lord With ALL your Heart and lean NOT on your own understanding”...I am Trusting...and totally not understanding.....
Neurology(Wednesday)---Before heading to our Nero appointment I called CCS and shared with them my confusion and how I was getting ...what I thought was differing opinions/diagnoses from our neurologist and epilepsy doctor,they were able to give us an appointment for the following day. Neurologist visit was very productive,as he shared with me his thoughts on Avery and what things look like from a medical stand point with his seizures now and what they may look like in the future, he thinks at this point having the epilepsy doctor officially on board to mange Avery's seizures is a good idea....with the understanding that certain medication treatment NOT be used! Avery was 11 months old on this appointment and I was finally able to get his neurologist to come out and say what his diagnose are.... for me having the diagnoses and an understanding of Avery's brain injury as he grows and gets older is very important, as it helps me have realistic goals and objectives for his life and this will help me get the services he will need along the way .....Never forgetting that ultimately God is in Control; and he will USE Avery no matter what to bring HIM Glory....(he already has)
These diagnoses are a few things he talked tome about along with things having been mentioned from other doctors that are part of his team....

Avery after a vsion therepy session.....

• Spastic Quadriplegic Cerebral Palsy

• Complex Epilepsy Syndrome

• Static Encephalopathy

• Cerebral Vision Impairment(also see other previous diagnoses of his vision...)

• Dysfunctional Swallowing

• GERD

• Anti Thrombian Three Deficiency (with a mutation in the gene) and is resistant to some blood thinners (like his mom)

• Sensory Self Regulation issues

• Autonomic dysfunction ...???

Avery...close up!

Neurologist approved the deep brushing program that OT wanted to implement. Our neurologist will contact the epilepsy doctor in regards to him taking over the seizure medication portion of Avery's care and they will contact me about a plan of action.
An MRI with sedation is scheduled for the end of June, right after Avery's Birthday. I asked about him being admitted for this procedure, as he will be sedated;the doctor agreed with this plan. As being monitored after would is a good idea .My nurse(well Avery's nurse..) was with me at this visit and I think we both felt it was a very very productive visit and that he answered my page of questions I had and any she had also had....I have allot of regard and respect for this doctor and believe that he is Top in his field, he is a neonatal stroke specialist.....I believe the feeling is mutual. Although I went into this visit a little distraught,because of our epilepsy visit the day before, I left with a feeling that my head wasn't spinning as it was the day prior...a good thing!

Coordinated Care Services doctor (aka...CCS) Thursday ----Helped pull all the above craziness together for me and she also did some lab work to look at why Avery has been having low grade temps....I also talked to her about Avery's appointment with Vascular Anomalies , last month and how I felt as though it was a useless visit ...about Avery's Hemangiomas are connected to the circulatory system and filled with blood. The appearance depends on location. Avery's is just under the skin and presents as a bluish swelling on his right lower flank ...back. This visit to CCS was a good visit to have after the week we had spent in and out of Children's.
This CCS doctor got back to me in a natter of a couple days(calling from her home) to tell me that a couple of his levels were off and that a visit to immunologist was warranted, although not emergent! Not a lot of time between May and June in my opinion.....

Yes ...you in the blue!!!!

“Though I walk in the midst of trouble, you preserve my life----Psalm 138:7”