Saturday, March 26, 2011

Celebration or disappointment

A few weeks ago Abe and I went to the women's retreat. Abe had respite for most of the speaker time and had a blast playing in the hotel room with her and his discovery toys stacking cubes. The speaker discussed that she was unable to have biological children despite that God gave her a Mother's heart. It was very difficult for her to see so many friends and family members having children. She is in her 50's now so is past child bearing age. However rather than living life "being disappointed" bitter and angry of her childless life she chose to be a spiritual mother to children who did not have role models in their homes. She did admit to grieving what she longed for so much. Abe is sick right now,not really wanting to breastfeed or eat but still playful, happy, maintaining urine output and oxygen levels. Thankfully he is not in the hospital. They think it may be a peanut butter allergy and a cold. So today we went to buy some chicken soup since he loves chicken soup. Oh our drive home I found myself disappointed that he does not sit up,walk or run like the other 2 years around us. I found myself grieving a "normal child", "healthy child" Just yesterday he crawled to me when I told him to come to me because it was time for his bath. I was so delighted and proud of him because his vision teacher has been working with us for him to crawl to me when I need to pick him up, change his diaper, put on his shoes,ect. What is interesting is I did not have a toy to entice him to come. I just told him a few times and put my arms out. He is saying more words to, "yeah", "na" "more". Some times he says the words at appropriate times even. For example, when asked "do you want more food" he says "more" or "is that "yummy" "yeah". He continues to wave hi and bye, blows kisses and makes a "f" sound that he learned when I blow on his food. Sometimes he does this with cold foods as well so he needs to learn the difference between hot and cold especially with the vision impairment. His thyroid level, free T4 was elevated but this was done at Naval and I don't know if there reference range is pediatric specific or not. this week we received our 2 year LLL spoon. It is a tradition for every year you nurse you get a spoon. The first one was "external devotion", I can't remember the 2nd one but I think it something about "strength" I will need to find out and post later. He attempts to sit up now. He is no longer safe on our bed without direct supervision because the little stinker figured out how to get between the side rail and bed and lean over the top of the rails. Abe tries to crawl after the cats now too. A few weeks ago I was in the kitchen doing dishes, yes Glenn, I do clean occasionally, and Abe crawled to the wall by the kitchen and peeked over and smiled at me. It was so incredibly cute. He continues to amaze us all but I find go back and forth in the stages of grief. I am trying to do everything I can to maximize his potential. Starting next month he will be attending class at Holly Ridge without my assistance. This is a huge step for us. I am planning to home school. I hope I will continue to receive the PT, OT, ST, vision teacher and school district support if I do home school down the road for kindergarten. That's all for now since he is sick and I think I am coming down with it as well.

Saturday, March 5, 2011

Decisions, decisions

Glenn is up for new orders soon. We need pray in order to make the best decisions for our family. It has been tougher than I expected having him gone this long. I have noticed several postings on face book about other military wives doing all these projects while their husbands are gone. I guess mine should be to finally unpack our house. Abe is still sick but his oxygen level was 98% on room air and heart rate was normal. I have not even taken him to the pediatrician this time. He did however see the ARNP at Children's and his ears were red but he was screaming. Any kid's ears would be red if they were screaming. If it seems he is not getting better or getting worse I will have him checked out. I forgot to mention that he was accepted into the Starlight Children's Foundation. They provide tickets to social events. We have not been able to attend any of the events yet but am looking forward to it. This would be a great way to escape the reality we face daily and connect with other special needs families and kids. This week at Naval Hospital I was there for a long time waiting to talk to a nurse about UTI symptoms. It was rather annoying to have to wait but I saw a family with a special needs kid that knew nothing about the Military Special Families Support Group. I was able to provide them information about it. What is interesting is there kid is almost 11 and they have lived in the area for 10 years now. I hope they join the group because this group of people have been awesome at advocating for our family. Also this month I want to do more with Mary Kay since it is uplifting and positive.

Wednesday, March 2, 2011

25 Months

Abe is 25 months old today. I had an appointment at Madigan today and it brought back memories of the unknown that we faced daily "Would he still be alive when we returned in the morning" Also "should I keep pumping breast milk for a baby that never will be able to even drink it". I remember one night Chris and Glenn drove back to Bremerton and I had Leanna drive me from the Fisher House back to the NICU in the middle of the night just so I could check on Abe. Calling the nurses just was not enough. I wanted to see my baby and see what medically was going with him. It's been a tough week, situation at my church that made me feel un-welcomed and a secretary at Madigan telling me that since I did not have anyone to watch Abe I would need to come back. Just so you know Madigan is a little over an hour away and gas is $3.47 a gallon and that is Costco gas so probably the best price. There was no way I was coming back. On that note the Madigan appointment was a preconception counseling appointment to determine if there is any medial reason for not having future pregnancies. The good news is there is no reason why I could not have future pregnancies. However it won't be without risks. The earlier a women delivers the increased risk of having another premature delivery. The shape of my uterus is not a contraindication for future pregnancies. However she was not 100% sure it is truly heart shaped since the surgical report from my c-section indicated a deviation. She said the uterus could have been contracting at that time which made it appear that way. She has seen women with heart shaped uterus deliver healthy, full term babies. She put in her note about a pelvic MRI to get a clear yes or no to about the shape of my uterus. My PCM would need to order it. However knowing this would not change the course of treatment so not sure it's worth the trouble. My recurrent UTIs would require daily antibiotics as a preventive measure. The length of the cervical canal would be measured every 2 weeks since shortening is a sign of labor. I think she said this is done only 16-22 weeks. I would not be required to have an amino or a quad screen since this won't change any treatment during pregnancy. An echocardiogram would be done on the developing baby to look for signs of birth defects. I do have PCOS and endometriosis which is not her specialty. These do have an affect on getting pregnant but were not a factor why I delivered so early. She thinks I may have had a uterine infection, like listeria that affected the uterus and not me in any way. I mentioned the cream cheese I ate at the hotel but she said that is not likely. Listeria can be from lunch meat and unpasteurized cheeses. I mentioned the cats in the back of my Jeep that had their litter box while moving from San Diego to WA but she said no signs of toxoplamosis. Plus she said I probably have antibodies against it. Research has shown that progesterone shots can help prevent premature labor and delivery so I would be a candidate for that too. There is no guarantee that there won't be any problems or that I won't deliver early. She did recommend that both Glenn and I are emotionally ready for whatever will happen. A healthy pregnancy does not guarantee a healthy child but even a child born healthy may get in accident or have cancer so you never know. I have heard that special needs kids tend to progress when they have a sibling to share their life with. I think Abe would enjoy someone to crawl around with. Now it is just a matter of when will we both be emotionally ready. Also with PCOS and endometriosis I don't even know if I can get pregnant or not miscarry. Life is too short to live in fear and we have to trust that God would never give us more than we can handle. Abe is progressing, still has significant delays but using both of his hands and trying to sit up. He currently has as a cold but he is at home and not in the hospital. The neurologist did not feel that his EEG showed evidence of seizures. Neurodevelopmental ARNP thinks Abe might be waking up during the night due to hunger or muscle spasms. If he is having muscle spasms then muscle relaxer medication would be prescribed. Abe says “yeah” and “more” sometimes too. For example when asked “is that yummy” “yeah” and sometimes he says “more” when eating. He only knows all done sign. He is working on more signs. I might let him start classes twice a week at Holly Ridge. This would be a class without me in the room unless I am the parent volunteer that day. He is going to be fitted for stander soon.