Summertime...

The slide show above will be just a piece of the summer. Annabel had a good time at the beach for the 4th. Meemaw and Grumpaw came up for the 4th and we sat on the beach for a good while. Since Annabel is sensitive to the sun, we try to spend more time on the deck rather than sitting on the beach. It had been a while since she had been in the water, but it was a great temperature and I do believe she really enjoyed the waves. She liked licking the saltwater on her lips after being splashed by the waves. On Saturday Mel hired a fishing guide to take the older kids fishing while Annabel and myself had a playdate with her little friend, Annalise. Since Annabel has begun to sit so well without assistance, she really enjoyed being with her friend. Annalise is not quite a year old, but she is very mobile. She should be walking very soon. She was so sweet with Annabel and shared all of her toys. Annabel does not have that many opportunities to be around little ones so she was totally in awe of Annalise. All went so well, we decided to repeat the playdate. Later in the evening, the big kids had set up their rockband downstairs(video game) and they invited Annabel to join them. I think she decided she liked the drums the best. Overall, the week was great! Annabel seems to be really making some advances in her physical development. As you will see from the pictures she is sitting so well. She sometimes will sit alone for 30 minutes or so. She has also began to bear weight on her legs, standing for longer periods of time. She still does the stander most days, but most times we try to stand her at the coffee table or stool she will put weight on those legs very strong and stand. She is very proud of herself. We have also had this jungle jumper for quite a while but Annabel just basically hung around in it. As of lately when we put her in it she begins to bounce and stand with her legs very straight. As with Annabel's eating there has also been progress. She can now eat refried bean and rice, mashed potatoes, sweet potatoes, corn casserole, jello and bits of meat. She has also begun to eat pasta and different sauces. We obviously cut this up fairly small and there has been no choking or gagging. So we are happy with how therapy has been helping in all these areas.
As far as Annabel's health, her urine is staying fairly clear. No infections which means no antibiotic and that makes us very happy. She is getting more liquids in during the day with her feeding pump and this has to be helping the UTI's. We do cath her every 4-6 hours and are placing an antibiotic wash in her bladder twice daily. If we are not diligent with her liquids, pediasure and cranberry juice, you can tell very quickly in the appearance of her urine.
Last week on July 8th we visited with her Gastroenterology doctor. This was her 3mth. post op since placing the feeding tube. He was disappointed in the fact that she had not gained any weight. Although, he thought she felt a little thicker in her arms and legs. We do know she has gotten longer. He wants to increase her three feeding from 4oz. to 5oz. He says by our next visit in 3 months he wants her to gain 1 pound. Now if it were me, I can add this in one meal and it never leaves me. So we are being very disciplined about the feedings. I have found when we travel anywhere to use this time for her feedings. A big issue I am having with the feeding tube is that it comes out of her button. I am not sure if she is pulling it out or the seat belt hits it, but it just comes out. If anyone has any hints about how to keep these in, I would appreciate it. Hers is a Bard button, just for the information.
On Saturday, Annabel and myself attended a going away party for Lauren. Lauren has been helping with Annabel for a while now. She is moving away to further her education. We are hoping that she will be back in a year. We are praying the big city lights are not an attraction for her. Lauren is a beautiful girl, inside and out, and she is so gentle with Annabel. I guess we will be making some roadtrips, so watch out Lauren!
As far the rest of the family it was vacation time. Tara and Derek went to Seattle to see some concerts. They also visited with their cousin Andy, wife Kelly and precious son Carter. They really enjoyed seeing the sites in Seattle. Mel, Carly, and Colette went to visit the sites in Washington, D.C. Their favorite tour was on Segways. After that everything else was on foot. They were exhausted at the end of each day. It was good to hear them talk about our country up close and personal. Tyler had to do his weekend with the National Guard and then one week of school for the Nat'l Guard in San Antonio. That left Annabel and I at home. We spent lots of quality time together, making our therapy appointments and just playing without many distractions.
Of course, as I had posted, Mieko's death was such a surprise. I was reminded to never take one day for granted, the frailty of this disease and that even when things appear great their organs are just more fragile. We know that without God, Annabel would not be with us today. I personally know that without God, I would not be able to care for Annabel. He truly gives me each day what is needed and I try not to dwell on the tomorrow. I will trust that He and only He will give us all what is needed when the day comes that He decides to bring Annabel home. I want to just be grateful of each day that we have here on earth with this miracle.
We will be traveling all together to the Trisomy conference (SOFT organization) next week. It is being held in Denver and it is such a wonderful source of information. Annabel, Tara and myself will attend the conference. We will also meet with four specialist on Thursday for different issues. This is a great experience to gain more information. Several of the parents at the conference have lost children with Trisomy 18 or 13. There are some survivors that we can attend workshops with and discuss related issues. The older children will attend ballgames, whitewater rafting, and do tourist things. I have heard that Mieko's parents will be at the conference to attend the balloon release in honor of Mieko and I am hoping to finally meet them. Another highlight will be to meet a friend that I have talked with via the internet. It is Abby Grace's mom. She is struggling with some very serious issues and I am hoping that all is well enough for us to meet. She has a link on the side bar of Annabel's blog.
I realize this was very long. I want to say again thank you for all the prayers. We know God listens and will be forever grateful for all who visit and comment to us. Hoping your summer is fun filled and peaceful.