It's a hard-knock life for us....

Our Shiloh Abigail is growing so quickly! She has become so articulate, and is often impressing the sunday school ladies with her vocabulary. I can't believe it, but as I write this I'm in process of getting our school room ready for kindergarten! Amazing! We are both excited!

This is Shiloh on our way home from watching fireworks. We bought them snow cones, she had blueberry. When the fireworks were over she stated, "We better hurry and get home before I get cab-it-tees (cavities)". She makes me laugh.

It's not everyday you get to snuggle with a princess, but in my case......it is!

The New Guy on the Block

Yesterday we saw our new pediatrician. Dr. Van Ostenbridge, they call him Dr. V.O. for short. It went well. He said it seems Aggie is being well cared for by all the other Dr.'s, he feels comfortable with all they are doing. The only thing he decided to go against, was the advice to stop nursing. How funny I thought! Since I was pumping and giving Aggie breast milk fortified in her bottles, and some straight fortified formula when I was out of milk, she is still benifiting from both worlds of nutrition. Mike and I have decided to keep doing what we are doing, we want to see what adding extra calories and rice cereal to her milk may or may not do for her. In theory, it should help, and if it does great! If it doesn't, as least me know we explored all the avenues presented to us to prevent surgery. The great thing is I can still nurse her if need be. I did last night at 10pm, and she was so thrilled that she just wanted to smile and coo at me every couple of sips, I highly doubt it added to her nutrition. I do think it did something for her emotional well being. :)

Menu Update Praise!

So...... Praise be to God who hears us! I have been trying for 3 weeks to get Aggie to take a bottle, as soon as I knew she would need to for her upper GI, and she just wouldn't. After our appointment yesterday with the surgeon, I was hopeful she would soon, especially if it could prevent surgery!! So I casually mentioned it to God, laziness on my part. I wish I could say I prayed and fasted and pleaded before Him, but I didn't. But you know what.... He still heard me, and He showered me with abundant kindness.

As soon as we got home from the Dr. yesterday it was feeding time, and I decided it was now or never. As I reported previously, she took 2oz. by bottle. The most she has taken in several months. I stuck with it last night (4oz.) and this morning(5oz.), offering the bottle first, letting her get her fill and then giving her the baby food. It is working!!! She hasn't nursed since yesterday at the Dr. appointment. I am pumping for relief, but that hasn't been as frequent as I thought it might be, but when i am pumping I've always gotten plenty, which puts my mind at ease when I think I might have been starving my baby by nursing her.

There are a couple of reasons the bottle is so important:

1. I can fortify(add calories) to my breast milk, or increase the calories/oz. in the formula, per the Dr.'s recommendation.

2. I can put rice cereal in the formula, to help prevent spit up.

3. It helps quantify all Aggies calories, intake, etc. so we can see what the actual problem might or might not be.

If Aggie was younger, I know this would be much more difficult, as I am pretty passionate about nursing my babies, but since we had the pleasure of bonding in this way for a whole year, I am thankful that modern medicine has the ability to help someone in our situation, and of course us.

New Menu Plan?????

We did see the Dr. today for the "surgery consult" about the tummy. It went well. We are not rushing into surgery yet. She suggested that we try using formula and adding calories to try and bulk aggie up, and perhaps some cereal to the formula, to keep it down her. I mentioned the possible milk allergy (she gets the same rash Shiloh did) and inability to eat from a bottle/cup, she suggested we let her get hungary and make it the only option. We also are suppose to see a speech therapist to help with feeding, and use soy products. It sounds so hard to me, but I did try it when we got home from the dr. and God had mercy on me..... she took 2 oz. from a bottle (the best she's done since early infancy), then I feed her some food as usual. It's not really enough formula for her to gain weight in theory, but it is a better start than I was anticipating since just a day ago all we could get her to take was about 1/2 oz. with much anguish. I've decided to go "cold turkey" with the breast-feeding to bottle thing and give it my best try if they think that will prevent surgery and help her, than that is what i want to do, though I have many mixed emotions and feelings about it. I'm looking forward to talking to her new pediatrician about it tomorrow at her appointment. The surgeon also wants us to do more testing on Aggie. They are with nuclear medicine. One will see how much reflux Aggie has, and the other will see how fast or slow her tummy is emptying. The results of these will determine to a greater extent the need for surgery. I asked about if she needed surgery the possibility of doing them at the same time as her ear tubes, though they said it is possible for that to happen, the surgeon will be out of town for the scheduled date of her tubes, and it doesn't sound like we will come to any conclusions as to whether or not she will need tummy surgery or not until a month or so after her tubes are in (August 15th). I think that is about all we learned today. I am glad we are not rushing in to surgery and exhausting all options prior to that, I pray one of them work! Over-all I am feeling peaceful about it, I'm not looking forward to the effects of a quick wean on my body, but it shall pass I am certain.

Pirates, Argh!

These little rascals have been running around gathering contraband, and digging up buried treasure. They are so funny and a joy!

Therapy

This is Aggies "therapy wall" that my parents made her for her birthday. It is a great invention for Aggie, since being on her tummy almost always invokes spitting up, not a good practice for weight gain. This way she is getting her upper-body work out against the wall, and gets to keep her lunch. It also encourages reaching up, which she needs, and has possibilities for many other exercises. The thought and attention to detail my parents put into it was very sweet and generous. Thanks Mom and Dad!

On another related note. How is physical therapy going? Aggie sees an actual PT twice a month. Our "early steps representative" meets us there. Then she comes to the house weekly to work with Aggie, and I do her exercises daily, through out the day. This keeps our PT appointments to a minimum, which is a blessing since we have so many medical appointments. Aggie continues to progress, though it is very slow. She is still not yet sitting up independently. It is a very meticulous process, as we have to use her body to teach her brain how to make her body work for every little thing. For example, as we work toward sitting up, we are strengthening her "core" muscles, abdominals, back, obliques. We will do exercises so that Aggie realizes she has abs, and then how to contract them for the purpose of sitting up. So presently her Abs and back are showing good strength, now we are working on her obliques, as falling over sideways can be a real problem. We are also trying to teach her to catch herself with her hand if she goes sideways. This is just one example of how the process works. She is remarkably close to sitting up, and can sustain it independently for a few minutes, but I would not trust to leave her unattended in this position, as she will certainly fall over. It is so amazing that ones brain and body can compensate in such a way after major damage has been done. We are hopeful for what the Lord may have for Aggie in her Physical well being and pray for healing daily. That she is continuing to progress, shows that the Lord is hearing our petitions and having mercy on our sweet little girl.

News Feed Addendum

I forgot to mention that Aggie does now have a pediatrician, as of Monday. The Dr. we applied for has accepted us after reviewing her charts. She will have her first apt. with him next Wednesday. Since all of the specialists she sees have to get "consent for treatment" from her pediatrician, this man/practice is taking on a lot of extra work with Aggie. We are grateful to have someone who is willing to oversee her care, and is able to grant consent for all her planned and up coming treatment.