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Vonda's Parenting a Preemie Journal


Entry #4 - May 28, 2002
~ Rolling, Rolling, Rolling, Keep that Baby Rolling . . .

AdrianaThis month, Adriana has perfected the art of rolling. She is getting really good at it, too. Last week, she rolled halfway around the couch before I stopped her. Before now, she would flip over or roll over once, but now she is constantly rolling. The times I find her rolling the most amusing is when she is crying and rolling at the same time. I think she really doesn't want to roll and she gets mad at herself, but she keeps doing it.

I am concerned that she will be delayed even more with her crawling skills since she knows she can get wherever she wants to go by rolling. She is still not sitting up unsupported, but she is sitting up very well when she is supported.

We received her NICU follow-up report this month. She was listed as having mild developmental delays and mild decreased tone in her upper and lower extremities. The report also states that she is at a moderate risk for developmental delay and that she has gross motor delays.

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I know almost anyone whose baby has been through what she has would be thrilled to see his or her baby listed as mostly mild delays with only one moderate, but I was disappointed in the report. I shouldn't be because I was there when she was tested and I know what she did and didn't do that day. I am not disappointed in her because I know she is doing well and is healthy. I am disappointed because I feel like I have not done my part in working with her.

Yes, I do some exercises with her, but if I were to tell the truth, I don't do them as often as they probably should be done. My days seemed to be filled with feeding her, changing her, pumping, working part-time, and the normal routines of any family. Sometimes I am just so exhausted that all I want to do is hold my baby and take a nap.

We have tried to be more conscious of working on her exercises since we went for the NICU follow-up. Bruce even made the comment that Adriana probably is trying to figure out what she has done wrong since we went from not exercising her enough to overdoing it. We are going back to the clinic this week so the therapist can finish her assessment. I think she will see an improvement in Adriana.

One major milestone that Adriana achieved this month was her first word. She said, "Da Da." We have been told she is on time with her language development, which is surprising because preemies are usually behind in this area. Her early intervention specialist told me that Adriana's language development is doing so well because we talk to her constantly. She is also babbling up a storm. Her favorite thing to say right now is "Ha." I think she keeps repeating that word because she likes the sound of it.

Adriana reading the paperWe met some friends who live a couple of hours away for dinner one night. Janet is a NICU nurse and she has not seen Adriana since she was a week old. She kept remarking about how good she looks and how well she is doing. She has told us before that the other nurses she works with have been so amazed at how well Adriana has done since she is a 28 weeker.

This month has also been the month for paperwork. The early intervention specialist has to fill out a lot of paperwork on Adriana every once in a while. This month, two evaluations were due. The specialist and I do them together. Sometimes, I do not know how to answer the questions because some of them are so specific or I don't understand them. The various evaluation tools vary, also. We were able to "close" some of her goals because she has achieved them. We left open crawling and sitting on her goal sheet. I did battle with the Social Security Administration this month. I will try to keep this portion of the journal short. Depending on the size of a baby or the condition of the baby, he or she may qualify for Supplemental Security Income. Adriana qualified for it because she was so small. She was to receive it as long as she was in the hospital and, then, she would be reevaluated.

In September, I called the Social Security number we were given when she came home and the person on the other end took my information. We received a letter in late April that we needed to provide a whole list of information to them, or she may lose her SSI and Medicaid. We were not as worried about the SSI because it was a small amount, but we didn't want to lose her Medicaid. (She qualified for this because she spent more than 30 days in the hospital. This type did not have income qualifications as long as she was in the hospital.) Her Medicaid will help to pay for any physical therapy she may have to have if my husband's insurance does not cover it.

I left several messages for the person I was supposed to contact, but I did not receive a reply. I went to the office two days before the deadline, only to be told I needed to come back in two more days. I had an appointment this time, and I went back. The person who had not been returning my phone calls finally met with me. As I suspected, Adriana was no longer eligible for the SSI because of our income.

The Social Security person asked me if this was the first time I had updated her file since she left the hospital. I said, nicely, no, I called back in September and updated it then. He said, well, she hasn't been eligible since September and we had been overpaid. He said since it was a small amount, they would waive paying it back.

I was fine with all that, but guess what happened last week? We received a big (we consider it big) check from Social Security for her SSI that was owed her. Huh? I have left two more messages with the same man, and I have not heard anything yet. We shall see what happens. Bruce has said no wonder we won't have any Social Security income when we retire.

This was also the month for the March of Dimes WalkAmerica for our county. Adriana is the March of Dimes Ambassador Child for our county this year. We were presented a plaque before the walk and asked to say a few words. Bruce turned the microphone over to me to say a few words. I thought I was going to lose myself with emotion, but I was able to get through the very short speech. I don't remember exactly what I said, but I said something like thanks to all those who walk, I am not a heartbroken parent today, and mothers all over the country will have miracle babies like mine because of money raised. I know God blessed us by allowing Adriana to survive, but I believe He works through modern medicine and organizations like the March of Dimes. I am not sure how she would have done without the surfactant therapy the organization was instrumental in researching, but I am glad it was available.

This month has been a stressful month for our family. We found out that Bruce's dad has lung cancer. He is doing fine, but having to go through chemotherapy. I think Adriana is giving him a reason to fight the disease. I wonder if one of the reasons she came so early was so she could get to know one of her grandfathers, or so he could get to know her before anything happens. I haven't even shared that idea with Bruce, but it has crossed my mind.

As Bruce told his daddy, "Miracles happen every day; we have one right here."

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