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Vonda's Parenting a Preemie Journal

Entry #5 - June 27, 2002
~ Yet another appointment?

AdrianaJust when we thought the doctor's visits would lighten up, we have started back with an even heavier routine. When I last did a journal entry, we were about to take Adriana for the rest of her NICU follow-up visit. (Was that just a month ago?) Adriana did much better at this follow-up appointment, and the physical therapist (PT) said she did see some improvement. She seemed to be in better spirits that day and was much more cooperative. The therapist did say she was still behind in some areas like sitting up unsupported and she was going to recommend that Adriana see a physical therapist in our area. She told us at the time that she did not think she would have to have occupational therapy. From what I have been told, physical therapy deals with gross motor developments like sitting up, crawling, etc., and occupational therapy deals with fine motor developments like grasping, pinching, etc.

The PT talked to Adriana's early intervention (EI) therapist to figure out whom to send her to for her therapy. Her EI said the PT decided after scoring her assessment to go ahead and recommend that Adriana see an occupational therapist (OT). Even though we were hoping to be able to escape another therapist because that would mean she is doing so well, we were glad that she was going to be recommended to receive more help. We think that more therapy can only help her in the long run. This past week we went for the PT evaluation and OT evaluation so they could assess her and set up appointments. So, I guess we had a small break for a while without any doctor's appointments.

The PT seems like a nice person who really enjoys children. One thing we were concerned about was how hard the PT might push her. We have heard some of them will push the children until they are in tears. While we know that she needs an extra push and someone who will really work her, like any parents, our hearts break when she cries. I think her PT is going to be fine with her. She is working with her to sit on her own.

Adriana and DaddyAdriana's OT said she is doing some things on an eight to nine month-old level and a few things on a ten to eleven month-old level. From what we have been told, that is about where she should be because of adjusting her age. The OT said she was setting her up for appointments to help bring her up to other children her actual age. The PT and OT have decided to co-teach her. I like that idea so she doesn't get worn out and starts to dread going to the facility. I asked the PT if she wanted me to wait in the waiting area or go with Adriana as she works with her. She said the choice was up to me. I have decided to go into the therapy with her, but I don't think Adriana is going to make that decision easy on me. She has started saying, "Mama" this month, and she usually says it when she is upset. The other day she became cranky while she was exercising. She looked right at me and said, "Mama." My heart sank a little, but I kept myself from taking her in my arms and holding her forever.

When we see the PT next week I am going to tell her one visit has already helped Adriana. Tonight while we were at Vacation Bible School at our church, I sat with her on the floor in the nursery. I propped her up in between my legs and she balanced herself on her hands. Just a couple of weeks ago if we tried that, she would fall right over. I was so overjoyed that I went and grabbed Bruce and my mother, who is visiting. I thought Bruce was going to burst with joy. He has really been worried about her not sitting up (okay, I have, too). Her birthday is next week, and I will not be surprised if she is not sitting up by then. I think she may crawl soon, too. I had hoped she would have reached these milestones by now, but I am excited that they seem right around the corner.

Many well-meaning people have told us that she will do these things on her own time, or don't worry, she'll get there. I am sure if these people had a nine month-old child (her developmental age) who was not sitting up, they would be worried, too. I know they mean well, but sometimes I think they think we don't know what we are doing or that we shouldn't listen to the medical field. One of my favorite sayings is, "When I was raising my child . . . " (I am sure you have heard that one, also.)

Our state (I think all states have this) has a program to help children like Adriana to receive medical assistance. The program will pay for what our insurance doesn't or the portion that it doesn't. Her EI said the program is going to change a little bit and the program leaders are really pushing for home environments for therapies. I agree that most children do better in a home environment, but we don't have the nice equipment readily available like the facility has. We were afraid our insurance would not cover her therapies, or limit the number of visits she can have. We were glad to find out that the insurance company will pay for unlimited visits as long as she is going to a facility for them. If she is receiving therapy at home, her visits will be limited. We will keep taking her to the facility where I think she will thrive. She does well in most new environments as long as they don't look like a doctor's office.

Adriana has become more animated this month. One of my favorite things she does is blowing raspberries. She does that and smacks her lips a lot. We think she is teething, but we have not seen any evidence of it yet. Bruce wants to go have her some dentures made. Adriana has been fussier than usual a couple of days this month. Normally, she is a very contented child. I don't know if that is just her personality or if she learned that from all she has had done to her. I thought, maybe she is so fussy because she is getting teeth. Nope. Nada. Nothing. Oh, well. She will get them soon enough.

Sleepy AdrianaI have had a couple of tests run this month to see if I have a tendency to develop pre-eclampsia again if I were to become pregnant. Pre-eclampsia has no known cause, but some studies have shown that some women may carry certain antibodies that will leave them pre-disposed to develop the condition. My blood tests came back negative for those antibodies. I also had a hysterosonogram done to look at the fibroid that I have. My doctor said he recommends that I do not have the fibroid removed because I risk damaging my uterus. We want to start trying again in the fall, but I am scared to death. We went to see a high-risk doctor a few months ago to get his advice. He said with my history, everyone will watch me closely and they would not lose me. He didn't say anything about the baby. I don't think I could stand that. Losing the baby while knowing the risks, just because I wanted another baby. I also don't want another baby to go through what Adriana has gone through. I know she has done well, but next time the baby may not. We have a lot of praying to do about this.

I haven't posted on the boards much lately mostly because I have been so busy. I have lurked every day, but with the antiquated dial-up modem we have, I can spend three hours posting one reply. (Okay, that was a little exaggerated.) I have to be a little honest here. I am finding difficulty in being overjoyed for others as their babies pass Adriana in development. I am happy for my fellow Stork sisters, don't get me wrong, and each of them has been an invaluable support to me with all I have been through this past year. I just find it hard that my child is one of the oldest on our board and she isn't doing half the things that the others are doing. I know I must celebrate her and her uniqueness, and be grateful for that. I think what I am trying to say is, I still care about each person I have come to know. I am lurking almost every day. Please don't think if I don't reply that I don't care, I just have good days and bad days. The good days are the days when I feel upbeat and I have plenty of time on my hands. The bad days are when I miss a meal and drive all around the place because we have an appointment somewhere. The bad days also consist of times when I don't feel very good about myself as a parent and I have to concentrate on getting through the day.

Oh, yeah. I have left out the best about the good days. The good days also consist of my daughter looking at me and giving me a kiss, one of her smiles or a laugh. Now that I think of it, every day is a good day when I look at her.

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