Monday, August 31, 2009

GJ tube #5?

I'm starting to lose count, but I think we are up to Abby's 5th GJ tube replacement.

Last week we noticed her tube was loose and found almost no water in the balloon (inside her belly there is a water filled balloon holding the tube against her skin).  The tube was obviously slipping out of her tummy when ever she moved.  

In an attempt to keep it in as long as possible I tried to re-fill the balloon several times on Friday... but it finally slid out when I picked her up.  We spent most of Friday afternoon at Huntsville Hospital waiting for our turn in the procedure room.  

The tube replacement itself went pretty smoothly, although we waited for about 1.5 hrs for the doctor to appear.

I'm finding that with each little crises such as this, I'm becoming more calm and relaxed than the time before.  The first time I saw her tube get yanked out I had a moment of panic and running around in circles trying to find our emergency G-tube to put in it's place.  This time I was able to calmly wipe up the mess, throw the old tube out, get the new one ready and replaced while Abby was in her stander, waiting to be strapped in.  

I find it kind of funny recognizing personal growth in this area... just not one of those things I thought I would be good at with my 5 year old.  It is however one of the many times I've been thankful for being an RN.

Sunday, August 30, 2009

3 year old cuteness

New schedule

School has started, and for Abby this means a brand new weekly schedule.  For me and the boys it means getting used to having lots of new people in and out of our home almost daily.

Abby's new school is wonderful and the staff has eagerly risen to the challenge of providing appropriate educational services for her.  Due to her compromised immune system and previous complications with illness, Abby continues to receive home-bound services.

This year Abby will be getting a few new teachers who will be coming to our home to work with us on various IEP goals.  She will have a teacher for the visually impaired, teacher for hearing impaired and a home-bound teacher.  These are in addition to the PT, OT and Speech that she was getting before.  

It is obvious that the Lord went before us and prepared the perfect people to work with our family.  The two IEP meetings we have had went smoothly and were actually pleasant experiences!  (For those who are familiar with IEP's, this is an answer to many prayers!)

The lady who will be our hearing impaired teacher is also a certified audiologist and has experience working with Deafblind students in the class room setting, but also in their homes.  She is fluent in signing exact English (a little different than ASL) and has experience adapting signs for Deafblind students!!!

So, on Mondays and Wednesdays it's like we get an audiological assessment, AV (auditory/verbal) therapy, sign language class and behavioral therapy for Abby all rolled into one!  This teacher is particularly enthusiastic, hands on and very loving towards Abby.  I have already learned so much!  This lady alone has made our move to a different school system worth it.  Praise the Lord for much needed help in the area of communication.  I could write several posts about the struggles and triumphs we've had in this area alone... but I won't bore you.

To give an idea of what Abby's weeks will look like, here is a skeleton schedule:

Monday-  teacher for the hearing impaired, home bound teacher and feeding therapy
Tues-  PT @ UCP and then teacher for visually impaired
Wed-  teacher for the hearing impaired (2nd visit), Speech and OT
Thurs-   Respite time with boys, PT at home
Friday-  Free day (reserved for Dr. appts and house cleaning!)

We have resumed our respite services with a new gal who started working with us this week.  I've set aside Thursday mornings for this time so that the boys and I can get out together and do something fun.  This week we visited the library and the park.  

In the midst of caring for Abby's complex needs we are trying to be very deliberate in our attempts to create special time for Josiah, and eventually Levi too.  For a 3 year old it can be difficult to understand and accept all the attention Abby gets during the day.  So far Josiah has been mostly cooperative and helpful during therapy times, with moments of jealousy creeping in.

The next month or so will keep us busy working out kinks in this schedule, getting to know lots of new folks and figuring out where to fit in the daily tasks of raising a family and caring for a home.

Tuesday, August 18, 2009

2 months old

Levi has grown so much the past few weeks!  He now weighs almost 12 lbs and has yummy rolls and squishy cheeks.

He's starting to show his smile more frequently which absolutely makes my day!

His sleeping schedule has become more predictable and is only waking up once or twice a night.  Our snuggle time is so much fun.

New toy

We finally got Abby's new gait trainer!  It fits her perfectly with plenty of room to grow.  She has been taking consistent steps in it, although not bearing weight yet.  

It has large tires that she can learn to push with her hands.

Now we just need to make sure she's in it enough each day to make progress.  One of the moms I talk to at UCP suggested taking her to the mall in the mornings to walk.  Her son learned to walk by going up and down the halls of their local mall in his gait trainer, with the elderly walkers cheering him on.  

Sounds like a great idea if we could make the time for it!

Sunday, August 16, 2009


We love our new look!  

So much has happened and continues to unfold at our house that I'm having difficulty finding time to post about them all.  Abby's new school, IEP's, equipment, health, appointments; Josiah's funny sayings and Levi's growth and development!

New updates coming soon...