December 2008

We celebrated Tyler's 14th Birthday at home with family...before the month of December got really crazy/busy....but not the crazy/busy you would be expecting... Tyler and Devynn spent a lot of time at My Brothers Keeper(A Christian organization...that gives back to the community to those in need...in Jesus name ) with their Grandma(my mom ...who has been my life saver...these many months)...what a great place for them to be especially at this time of year. Although my kids don't go there to be recognized, it always does my heart good to hear what great helpers and servants hearts my kids have! Anyway so Avery's feeding issues, continue and Avery starts to loose weight , and is considered failure to thrive. We are admitted to 9east at Children's. While here he is still losing weight...We had many many tests/EEG/MRI/labs/evaluations/ along with other tests... and lots of questions question questions.... At one point, I had spoken to a Neurology Fellow, and expressed my concerns about Avery's difficulty in eating, lack of eating and weight loss...I had shared my thoughts and concerns....I stronger believed that this all could just be how the brain damage from his strokes have evolved and that I didn't really think it was caused from a new injury...etc...etc....ya want to know what he told me???? ...this is sure to make you chuckle!!...he said that.....” his eating or lack there of has nothing to do with his brain”.....I'm not kidding he seriously said that...and to think he has the degree in medicine...NOT ME! Avery and I were here while Devynn was in a little drama at church..I was rather upset I missed it, but she was so understanding and I was able to watch the video Joe made of it. As you'll continue to see in the months ahead, this was only the first of what may be many things missed...but Avery is were he needs to be and so am I. Joe and I have had several conversations and we have agreed that at least one of us will be with Avery when he is inpatient...We have also talked to the other kids about this and they have been so grown up in there response and have really impressed both Joe and I....all of them said that they understanding and that they want us to be with the baby when he is in the hospital. We really are blessed to have such a great family, and sometimes it hits us that maybe we are doing something right! We spent Devynn's 9th Birthday at Children's....but the Child life specialist on our floor is so great...she had balloons, and little gifts...and I had a cake as well...it was made really special for her special day, so I was glad!

The end result of this hospital visit was that Avery got a N/G tube placed in his nose, so we could give him his nutrition, for his continued growth and development. Another piece of information we received from his MRI this month was that the areas of the brain that were damage and that had the blood clots,showed that the blood clots were in fact gone....however along with the blood clots being gone, so is ALL that brain tissue....Not really what was hoped for...but ....as I often say”It is what it is”....No matter what Avery continues to be a blessing to our family! We came home just a couple days before Christmas ,which was wonderful,we were able to spend Avery's first Christmas at home and we had time with family. I may post the Christmas card that I sent out and wrote this past Christmas....a good reminder even to myself of the meaning of Christmas...and maybe even life in general!


November 2008
Avery .....had his central line removed the end of last month and is doing relatively okay on that front,he had some minor set backs from his other procedure and had to be sen at Children's .....but is doing fine all in all in that regard.....Avery meet his Aunt from Texas this month and we had Thanksgiving with family...a nice time was had by all.... At the thanksgiving service st our church I was able to really reflect on this past year in regards to my health/pregnancy, delivery of Avery ....I really give thanks to God for all he has been and done for our family through theses life challenges....Avery continues to have reflux issues and is on medication. Blood in his stool has stopped ,since I stopped dairy in my diet.....Avery has had more difficulty with breast feeding and bottle feeding ....I am happy that I was able to breast feed him for 4 -4 ½ . Avery was seen by the neurologist the end of last month, I am concerned that Avery does not see, as he is not really tracking things. We will address this and he will be seen & evaluated by a specialist /teacher by someone at Perkins,in the next few months. The neurologist was happy for us to report that Avery gives us a smiles here and there. We will continue to monitor Avery's development along with development as well as encourage him PT/OT continue to come and work work on stretching and neck control ....tummy time is not a favorite of Avery's but we do it to help him develop his neck muscles. We love the therapist that come out to work with him!! Avery is not crazy about tummy time...but this will continue to be an area to work on ALWAYS and OFTEN!! as you need head control / trunk in order to achieve many developmental skills....

October 2008
This month I have gotten organized finally with school and schedules and I hope to continue to be this way....Avery continues to have gagging/coughing; reflux ..and he was seen by a GI doctor who started him on reflux medication. Although Avery is having some difficulty with breast feeding, I continue to work at it;while also making sure he receives the nutrition he needs. Avery's blood in the stool is also being addressed & I was put on a NO milk/dairy diet;because I am breast feeding & this diet is to avoid him from getting any milk/dairy. The GI doctor and I had a good discussion about Avery and his past medical history, she had said that it is very possible that his Reflux stems from his brain injury; we will monitor him and adjust medications /feedings as necessary over time. Avery continues to have the Thrombate administered until his line removal. Avery had surgery to have his central line removed @ the end of this month and another minor surgery ;things went well and he was just hospitalized for a couple days. Prior to the line removal it was discussed at grate lengths weather to have Avery receive another blood thinner, since we know he could not receive lovenox/heparin.....the end result of this discussion is that we decided that the risks did not out weigh the benefits,if there were any benefits. We may have to revisit this treatment at a later date. After a complex pregnancy;with many health issues....I had been cleared by the various doctors this Fall and I was more than thrilled to have celebrated my 36h birthday with my family this month...since it was unknown if I would make it through the delivery and have another birthday!! PT & OT continue to work n stretches ....head control ...ROM and these things are always carried out ongoing by mom!

September 2008

As you may know Avery came home last month with a central line and was administered Thrombate, due to his Anti Thrombin 3 deficiency. This was given by infusion nurses 3 times a week.
Avery had a blood transfusion because his hematicrit continued to be low and he was more sleepy/lethargic..etc..and his coloring was pale;he did well with the transfusion.
We did find out that some result had come back in regards to our clotting disorder Anti Thrombin 3 deficiency;Avery and myself have a mutation in this gene that is already deficient,both Avery and my self are resistant to lovenox (a heparin blood thinner)...which means it does not matter how much we get of this anticoagulant our bodies to not respond to it at all. Although this is very helpful information it doesn't really explain his severe strokes in infancy;not much research or information is available in regards to this clotting disorder with the mutation with this clotting disorder ..The other kids have not been tested for the mutation at this time. My placenta was found to be fully loaded with blood clots,the worst that this pathologist has seen;even in still born babies.

Avery started OT and PT this month, as he has very low muscle tone. One of the goals is to work on his neck & his trunk control & to do stretches on all extremities. At his time he has rather good suck on the pacifier & continues to breast feed with supplementation of formula when needed. Avery did mot respond well to infant massage.

Grace, Avery and Grandma(in my school room ) Fall 2008

Avery still has had blood in has stool(not as frequently as he had before), and it is thought that a it is a milk protein allergy;he is still breast feeding and supplementing with formula..
He had a couple episodes of chocking followed by his coloring would change...it was pretty scary @ first; I was told it was likely it was reflux.

Avery in his swing ...one of the few times we were able to use it!!!!

August 2008.....
After discharge, we had a lot of adjusting to do as a family of six;along with having many appointments through the remainder of this month. We also started the process with Early intervention. for Avery. Hemaitcrit still is on the low side,but they are choosing to not do a transfusion at this time. Research continues to be done in hopes to find more answers about our clotting disorder,no concrete results at this time.