Saturday, February 27, 2010

A sweet blessing...

LINZY... Derek gave Linzy, his girlfriend an engagement ring tonight. We don't have a date as of yet, but looks like this summer we may have a wedding. Her mother is so good at this sort of thing so I am excited about being part of this planning. We love Linzy and we love how she makes Derek smile. We are praying that they will have a very blessed relationship and many years together. We have known her family for many years. Actually, before our children knew each other, Linzy's mom and I talked about how we wish we could get our children together. They were in high school then. God has a way of doing things in His own timing and His own way.

Thursday, February 25, 2010

Just unloading...

I truly feel so blessed that I don't know how I am about to start my whining again...Sometimes I think I whine because I am inconvenienced, or don't want to do something! But most of the time I really don't like doing these things to Annabel. Her surgery was done on Jan. 8th and we slowly decreased catherization. Just this past summer we were told that she needed urine residuals under 30. Well since her surgery in Jan. for the tethered cord thing she had been urinating very regularly and most of the time 3 times during sleep. (Annabel doesn't like to be wet or dirty, so she makes a noise right before and right after wet/dirty diapers) During her last hospitalization a few weeks ago it was found she had another UTI (only 1st since surgery in Jan.). She also had some sort of respiratory infection that zapped her oxygen and we are still struggling with this mostly during sleep. Her energy level has been great, sleeping well and just a happy funny little girl. I must say I have been enjoying the lack of having to cath her every three hours, worrying about being at a clean facility (restaurants with changing tables), about strangers having to cath her who may not make sure she is clean (I am just extremely hard to please) and the biggest single issue is that what I am doing to her, her tissue and possible introduction to these bacterias.
So that brings me to Tuesday, Feburary 23rd, our 6 week check up post op. I went in to the appointment for the renal ultrasound and appointment right after with Dr. J (urology). She is standing straight up with my help looking so strong and he opens the door and says, Wow she looks great, How is she doing??? I reply, Really well, she has many wet diapers. He says, how many times are you cathing her?.. I reply, NONE and I am loving it. He asked a few more questions and says "NO INFECTIONS????. I reply, Only one and show him the lab results (what the bacteria was, counts, etc.) He looks at me and says, "You need to be cathing her four times daily." He continues that she is a breeding ground for bacteria. I told him after the surgery he residual were low and that I thought as long as they were under 30, that was good. He says she must have ZERO (0) left, that she must be drained.
Here is where I am whining! Families are told each day that they have way worse diagnoses or time left with their little ones. I have time with Annabel and cathing is not that terrible. Yes, I don't want to do this but will. In my heart, I don't think this is best right now for her. I understand his thinking but I just don't want her going through this. I am 50/50 thinking if I don't drain her dry she will be this breeding ground for bacteria, but the other side is that I will continue to introduce (no matter how careful) more bacteria. Because of her history with c-diff, she needs to be on as few antibiotic as possible. This last one that she came home on tears her little tummy up but it has been the only one as of late that she is sensitive to.
I want to say I really like this urologist. He is fairly new to us but he is so much more caring than the last two that she has had since birth. I understand his thinking and now I must deal with me. My last question to him was that I thought that we may not have to cath her any longer if this surgery worked. He said No, that the surgery was to hopefully just slow the progression of this disease, meaning the damage to her kidneys. Maybe I was just too hopeful and heard what I wanted to hear. These are the days I don't like this Trisomy 18 thing!

Monday, February 22, 2010

She will miss him...

These were taken right after she woke from her nap. She has always like to snuggle with Tyler. We will be taking him to the airport Sunday morning early. I often wonder where does she think he goes when he is deploying. We do have a picture of Tyler and herself laminated and hung in her bed. She often reaches over to it and just knock on it with her little hands. But we are so thankful that we were allowed this visit home with him.

Sunday, February 21, 2010

Enjoying the family....

Rainy Days are great when we are family!
When Tyler arrived I thought two weeks were forever. I find myself thinking of the few we have left before he leaves and then I am sad. That is the negative Cathy but I really should be counting my blessings since he wasn't even suppose to be here yet. When he leave I know it will be a good while before he is home again. We are just trying to spend as much time together as we can while I am trying to understand that he does have a life outside of my home.
I wish I could say I have made many home cooked meals but that would be such a lie. We have eaten together many times but mostly out to restaurants. This past Monday night Tara (who works in Marketing for Jason's Deli) had a viewing of Unwrapped featuring Jason's Deli and one of their famous sandwiches. So each department was ask to show up to be represented. So Tara asked her family to join her and we did. Her department won the Spirit Award for having the most participation for her department. Of course, our entire family counts as many. Just last night my mother cooked rice and gravy with round steak, corn, green beans, salad, rolls, homemade chocolate pie and my sister homemade cherry pie with whip cream. Lets not count the calories but it was such a great time to get together. We have had a few sunny days as of late so we planned on driving to the beach and looking at the progress since Hurricane Ike and eating at our favorite place, Stingray over the water. Sun was a rare sight with mostly drizzle and fog. But it didn't matter to us as we shared good times from our beach trips and just enjoyed being together. The twins had their friend Kayla, Tara had her friend Tanya and Derek had his girlfriend, Linzy. We all ate way too much seafood and then took a ride to look at our addition. It is still heartbreaking to see the destruction from the hurricane.
Annabel didn't make the trip with us to the beach. So many times the focus is all about Annabel and that is wonderful but today I just wanted to be able to relax and enjoy our time together with the older kids. Many times everything is around feeding tubes, cathing(not right now, though, meds, naps etc. Also I am still not getting her out except for school until she is 100%. I would have to say she is almost there. I am aware of a flu/respiratory, virus going around and so we are going to lay low for a bit longer. Her biggest issue now is that even on oxygen she is still going way too low. She seems to be gaining weight and feeling great.
I will close by thanking so many of you for your prayers for our family.