Sept Update

Emily had an appt at clinic on Monday and things went GREAT! She's ALMOST up to the curve on the growth and height charts. She's 20 months and is almost 21 lbs and about 28 inches. She had a nice growth since our last visit. She's finally getting an appetite and is eating lots of table food now. Ive noticed the spicier the food the more she likes it. She had her first infant lung function test a few weeks ago and it went ok. She did have mild obstruction but most likely from all the issues she had when in the hospital as a baby - nothing enough to worry about though. She will be getting another round of the synogis RSV shots this year to hopefully avoid any hospital visits. We are going to try her on dairy products again to see if she can handle them - i sure hope she can b/c that will open all kinds of doors for more calories!

Update

Emily had physical therapy today (something she's done with ECI twice a month since Oct). She is now where she should be for her age and PT is O V E R! I know all kids do things at different times but Im so happy that she's overcome her hurdle of laying in that hospital bed for the first 4 months of her life.

So in the last week Emily has started walking (July 18), eating real food (willingly) and finally hit the 20 lb mark yesterday.

Update

Its been a while since Ive updated and we've had a few changes. Emily is no longer on her meds for high blood pressure!!! We are thrilled to have something go in the right direction for once. We are still struggling with her eating and slow weightgain but hopefully we'll figure it all out soon. We are going to be having a GI test done to see if she's digesting food too slow - and if so we'll get some meds to speed that up to where she is actually hungry and will eat more.

She's definately developed her own personality and has a little bit of an attitude like her big sister. She's has gotten big enough that they actually play together now and they love each other so much.

All in all - no news is good news - we are just rolling with the flow and being thankful for no hospital stays.

A sweet poem

Heaven's Very Special Child
A meeting was held quite far from Earth
It was time again for another birth.Said the Angels to the Lord Above -
"This special child will need much love.
Her progress may be very slow
Accomplishment she may not show
And she'll require extra care
From the folks she meets down there
She may not run or laugh or play
Her thoughts may seeem quite far away
So many times she will labeled
"different", "helpless" or "disabled".
So let's be careful where she's sent.
We want her life to be content.
Please, Lord find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they'll know the privelege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven's very special child."

Picture Time

Here are the most recent pics the girls had taken at daycare.

Easter Time

All is going good - a few issues with some nasty viruses going around but all in all we're doing good. Here's a pic from a visit with the Easter Bunny - neither of the girls were too fond of him.

Just a quick update

We have started Emily's overnight feedings. She gets her formula thru her tube from 11pm to 5am. Hopefully this will give her the extra calories she needs to start growing. Its certainly been an experience. She's supposed to have enzymes at the beginning, middle and end - well she's too full to eat them (they are mixed with applesauce) in the middle and end so we're waiting on new enzymes that are in powder form to put thru her tube at the end. This should make life a lot easier on us all!
She saw her Renal docs this week and everything is looking great. They want to repeat some tests on her kidneys to see if she still has the renal reflux - we'll discuss that at the next visit in May. She also had labs drawn and she was so good - they got the vein in one poke and she didnt even cry.
She only has 1 more synagis shot and Im sure she'll be happy - she screams so bad with that shot.

The girls love playing with each other. They are always full of laughs. Emily is gonna be a much bigger handful than Abby was - she has a sneaky little laugh when she's doing something wrong.

1 Year Update

Can you believe it - our little Emily turned 1 on January 7. No major sickness in a while (knock on wood) and for the most part she's doing good. We saw Pulmonary docs at the first of Jan and they still want her to gain more weight so we've switched to a higher calorie formula.
She had a visit with GI yesterday and she has been taken off of her meds for her TPN liver disease. Her liver and spleen are where they should be and around normal size. Thank goodness for that! Physical therapy is still going good - she's doing better at standing and I think is about to start pulling up any day now. She has a mouth full of teeth with more on the way so I think she'll be making her way to "regular" food soon.
It was a tough year - we definately hope 2007 brings us easier times!

Overdue update

Wow its been a while since Ive updated - nothing MAJOR has gone on but we've had a few ups and downs. Emily got sick at the end of November so we were unable to go out of town - most likely just a virus though - no hospital stay! She now has a few teeth and can eat french fries pretty good. HAHA Physical therapy is going well - she's crawling around and they are working on getting her to stand and walk. She's already all over the place with her little scoot. She's just growing up so fast - she hits the 11 month mark this week.

The girls are both ready for Christmas - they love all the decorations and Im sure will be excited to see all the packages under the tree. The pictures above were taken for Christmas.

A Few pictures

Here are some recent pics of the girls. School pictures, Halloween picture and Emily's 9 mth pictures.

Swallow Study

Emily had another swallow test last Friday. She did a little bit better and can now take what they call nectar consistency. We are able to put some thickening gel into her juice so she can drink that with a sippy cup.
She also go her first tooh this weekend. Finally - now if she'll just get a few more she can start eating real food.
There have been no major issues to deal with (knock on wood) so hopefully we'll head into the fall with few illnesses.

ECI Evaluation

ECI (Early Childhood Intervention) came out to evaluate Emily last night and she definately qualifies for physical therapy. Developmentally she's about 3 months behind but socially and emotionally she's right on target and maybe a little ahead.
She will get physical therapy twice a month and they expect her to improve quickly. Our first goals are to belly crawl, sit up and stand.

Recent Pic

Just wanted to share a recent picture of Emily in her new bumbo chair and her new favorite activity - playing with her toes.

Visit at Clinic

Emily had her visit at the clinic this past Monday. Overall they were happy with her growth over the last few months. They did express concern about her getting sick so often though. She'll be starting monthly RSV shots in Oct and will get a flu shot as well. No changes to her meds this time either. No more clinic visits until November now.

Update

Well we've managed to stay out of the hospital, except for a visit to the ER. We have to be very careful to not let her dehydrate so we don't take any chances.

She had a visit with the Renal doc yesterday and all is Ok. They saw no damage to the heart from the high blood pressure and her kidney's are growing good. Now we dont go back there for 2 months!

All in all the last few weeks have been good - she's almost 15 lbs and growing good.

Hospital Stay

Emily had her first stay inpatient at Texas Childrens Hospital. Sunday we took her to the ER because she had lost a few pounds and was looking dehydrated all within about 12 hours. They admitted her into the hospital Sunday evening. Her levels are finally Ok and she was able to come home last night. They believe the problem is with her kidneys. When she gets sick they are not getting rid of all that they need to be, specifically the sodium which causes her to dehydrate so quickly. She did have another renal U/S and echocardiogram so hopefully we'll learn something from that in a week or so. Their only advice is to get her into the doc quickly if she begins to throw up or has any diarrhea.

Visit with Renal doctor

Today was our first visit with the Renal doctor. She's been officially diagnosed with Hypertension and will have to have her BP monitored daily as well as stay on the BP medicine. We have to go back in 1 month and also have a renal ultrasound and echocardiogram done in the near future. Hopefully her renal reflux will show signs of improvement.

ER visit

We had our first trip to the ER at Texas Childrens's Hospital last Wed night. Emily got sick at daycare and we were afraid of another dehydration episode. After spending all night in the ER (you can imagine Abigail was not a happy camper having to stay too) it turns out she was OK - not dehyrdated. They did give her fluids after many tries at getting the IV in. Abigail was very concerned for her sister. At one point she made the nurse feel bad because she said "That nurse put a hole in my sister!" She's very protective of Emily. Better to spend a night in the ER for peace of mind that end up with another lengthy hospital stay.

Update on Doc visits

Last week was a busy one. We met with Pulmonary on Monday and everything is going well. Her cultures have come back negative twice so we no longer have to take the inhaled antibiotic and we don't go back until Sept. Wednesday we had our first appointment with the new GI doc - pretty uneventful - nothing is changing - we see her again in Oct. We also saw the surgeon today - no more long tube hanging out of Emily - she got her g-button. Its so much easier for her to be on her tummy now. She's teething right now so she's been chewing lots and been a little cranky. I'll be so happy when they finally come in.

6 months old today

I can't believe Emily is a 1/2 yr old today. It just doesnt seem possible. Here are some new pics.