Wednesday, December 8, 2010


Update blog!!!

I am not really sure where to begin, so here goes~~~

Matthew and Keto~~

We are not seeing any seizure control at all!  As of the 23rd of this month we will have been doing Keto for four months.  We have seen massive amounts of cognitive gain, which we are truly excited about.  His seizures have also been changing.  Pre-Keto he would have about twenty seizures a day lasting approximately 5-10 seconds.  As of now, we are averaging fifty seizures a day, and they last approximately 15-90 seconds!  They are also presenting with much more aggression.  Pre-Keto many people would not even notice his seizures.  As of now, they are very very apparent.  He uses his whole boy when he seizures.  However, he is a trooper, and the seizure monsters do not seem to slow him down!

Matthew and the Neuro~~

Lets just say, we do not much care for Matthew's neuro!  He doesn't seem to listen to us much.  He is finally (FINALLY) agreeing to possible wean Phenobarb if we see even the slightest bit of seizure reduction over the next month.  We are documenting and tracking every daily activity, in hopes that the proof will be in the pudding! 

Matthew and J~~

After many months of deliberation and stress, we decided Matthew may need a nurse.  J is amazing.  We just love her and what she does with Matthew.  It is so refreshing to know that there is someone who loves and cares for our boy like we do.  Having a nurse really helps during flu and cold season when Autumn has appointments.  Matthew can stay home and play with J.  It was truly the right decision.  He gets more therapy and more one-on-one time now.  J--You Rock!

Matthew and surgery~~

Matthew continued to have chronic ear infections after one of his tubes came out.  Our new ENT suggested titanium tubes and removing his adenoids.  We went in last week for an overnight stay following the surgery.  Lets just say, our boy is a rockstar.  He did awesome, and we got to come home that day!!!!  He seems to feel slightly better regarding his ears; however, he sounds snotty and yucky when he breathes.  We are hoping this is just a "healing process" after the surgery, but we have a follow-up next week.

Autumn and her bottom~~

At our first appointment at Scottish Rite we were informed about wound prevention in children like Autumn.  We are diligent about applying cream to her bottom to keep from getting red.  Well, apparently there may be an infection or bacteria in her stool (yep, TMI)  and it is conflicting with her skin.  Her bottom looked a little red Sunday night after bath.  It was still red Monday morning.  When I changed her after her morning nap, her skin had gone from red to sunburned red and peeling!!!  We snatched her up and took her to the local ER.  They do not have a lot of knowledge about specialty patients and assumed we had put her in bath water that was too hot!!!!  After a good cry and a loud scream, we are probably heading to Scottish Rite tomorrow just to have it double checked.  It seems to be starting to heal, but our sweet girl doesn't even want to sleep on her back right now!

Autumn and ears~~

With this being Autumn's first fall/winter out of the NICU we have been a little crazy.  She was such a preemie, I am constantly worried about her immune system.  So far, the girl is a warrior!  We have battled two double ear infections in two months, but have stayed away from nasty other stuff (knocking on wood here).  We may very well be introducing Autumn to Matthew's ENT!

Autumn and her legs~~

Our diva is not listening to any doctors.  She may not ever "walk" like you or I, but let me just tell you, she is not letting anything hold her back.  She is starting to pull up on things are knee walk to them.  She is gaining control of what abdominal muscles she has and growing in strength and balance.  I don't think it will be long before she is "Autumn walking!"

Autumn and the terrible Twos~~

The terrible twos came to our sweet girl an entire year early!  She is really starting to exert her independence lately, and in the midst she has mastered the art of the tantrum!  We are very proud of her "go get 'em" attitude, but when she doesn't get her way she has started to pull her hair out and pout!  I promise words do not do it justice!!  So please remember us in your prayers.  The teenage years are already haunting me!

I think that about covers to big ones!  I will try to update more often!  Happy blogging!!!

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