Sunday, June 29, 2008
Sooner Start came out on Friday and they were very pleased with Anna's progress. They were glad to see she is developing some object permanence, they said this is evidence that her cognitive side is moving forward. We agreed on having OT twice a month for now. They will teach us things and then those 2 weeks in between visits will give us a chance to work on the skills. They are supposed to be bringing out some more adaptive equipment for us at the next visit. They were telling us about another child they had on services who is also named Anna. She is older then our Anna. They said our Anna is just like that Anna and they want the other Anna's OT to come out and see our Anna and maybe give us some more ideas on what worked with the other Anna. I believe the other Anna was also diagnosed with CP but ended up finally being diagnosed with a chromosomal abnormality. They again strongly encouraged us to have genetic testing done. I teared up. In some ways, a genetic problem would be better because I could let all of the guilt go. I could not have done anything different to change something that went wrong in the chromosomal part of the equation. But on the flip side, if it is genetic then that means it cannot be overcome- genes don't change. With CP, we can work hard and overcome the disabilities but with genetics, nothing will change. I spent a lot of time in tears the last couple of days. I had been doing so good but I got sad again. I guess it will come and go from now on. Carly's poison ivy is slowly getting better. I was up with her most of the night again last night. She is on steroids and is going 90 to nothing and can't seem to slow down. She has been funny though. She asked why Kenneth was getting baptized this weekend and I explained it was to show everyone that he loves Jesus. She says, "But Mommy, I love Jesus too but I don't want to go under water and get advertised." She was busy getting in trouble most of the day today. It is so hard to mind on very little sleep. Anyway, we were on our way home from Kenneth's baptism and Kenneth was getting on to her for misbehaving. He asked her if she understood him and we were both waiting for a response from her and did not get one. We turned around to find her with her fingers in her ears and not listening to a word that was being said. UGH. She can really try my patience sometimes. On a sad note, we received word Friday night that a friend had died. He was involved in a tractor accident and did not survive. His name is Terry Hyman. He was a state representative for Oklahoma but he was so much more than that. He was one of the last of a dying breed of men who have good values, love the Lord, love their family, want to serve the public, and believe in fighting for what is right. He was a true southern gentleman. He was instrumental in getting funding for the rural fire departments in this area and fighting for those who could not stand for themselves. He was just an all around good person. Kenneth called on him many times and Terry always came through. He didn't just do this for us, he did it for anybody because he loved people. Please keep his family in your prayers. They had already suffered a great tragedy in 2003 when their daughter disappeared from OKC and was found dumped alongside a highway in Mississippi. I cannot imagine the grief this family has had to endure. It is unthinkable. He will truly be missed by so many and anyone who knew him is no doubt a better person for having known him.
Thursday, June 26, 2008
So for the past 3-4 days Carly has been itching. It started out as a few "chigger bites" mixed with a few mosquito bites. The itching has gotten worse and the "bites" have multiplied day by day. So I have religiously been putting benadryl spray and cortisone cream on these "bites." It did not really seem to help much and she just kept getting more and more "bites." She has not slept well the past 2 nights because she was itching so bad. She was waking up in the night and asking me to please scratch her back. She could not stop itching and whimpered throughout the night also. Well tonight Kenneth got home earlier than usual and saw me putting medicine on Carly's "bites." He then lets me know that I am quite the moron because the "bites" I have been treating that keep multiplying in number are actually poison ivy. OOPS! I do not react to the poison ivy so I had no idea what it looks like. She has it from head to toe (eyelids and hoo-hoo included). Poor kid. I gave her some tylenol and benadryl and put her to bed. We will be off to see the doctor in the morning for some steroids. Poor kid. You would think I would know better. So, I got a phone call after that and was informed that my nomination for mother of the year had been withdrawn...
Sunday, June 22, 2008
Wow, I haven't updated in awhile. Things have been busy around here. My sister and her 2 kids came to visit last week and we had a wonderful time. I wish they could have stayed longer but I guess all good things must come to an end. The kids had such fun together and Carly cried for a good 30 minutes when they left because she was already missing her cousins. Much later that night she said again, "I'm still sad, I miss Ainsley." I hate that we live so far apart but it seems the military doesn't really care about proximity. I know they are happy in Georgia but that doesn't stop us from missing them like crazy. We are hopefully going to all take a trip to Florida later on this summer and so we will see them again at the beach. We took the kids swimming and Carly and Anna both freaked out. Carly is so afraid of drowning and Anna (I think) thought the water was too cold. Ainsley fell off of the water slide a good 5-6 feet and landed on the ground. We were so blessed that she was not badly hurt- a few bumps and bruises but nothing that won't heal. As she fell it seemed to be in slow motion and I couldn't even move. So they left on Friday, which was my 31st birthday (geez I'm getting old) after feasting on Mexican food for lunch with some cupcakes for dessert. Carly does not believe it is a birthday unless you have had cupcakes or cake. Kenneth and I went out Friday night for my birthday dinner to a little place called "Tokyo." Before you start thinking we are rich and lavish, no, we did not hop on our magic carpet and fly to Tokyo for dinner. It was a hibachi Japanese restaurant where we had some fantastic food and beverages. It was a nice date and we really enjoyed each other's company. Kenneth had not ever been to that type of restaurant and was quite impressed. I worked all day Saturday and then here it is Sunday. Kenneth was gone all last night rescuing some idiots who got stranded at the river. Yes, they were idiots. The Red River is full of the "quick sand" you pretended about when you were a kid. You have to be careful during the day but you sure as hell don't hang out in that place at night- and with your kids no less. 1 rescue boat, 1 air boat, some firemen, Oklahoma Highway Patrol, and 7 hours of rescue time- yes, they might qualify for the Darwin awards this year. When Kenneth and I were first married we got stuck out there when we buried his old truck in the mud (see below). I do not think (I hope) we would be stupid enough to do that with small children. So anyway he was gone all night and then was on duty today so I haven't seen much of him since Friday. I will be glad when he gets home tomorrow evening. Carly and Anna were great today. They really played together for the first time and were truly entertaining each other. It made me smile. Then they took a bath together and I am not sure who had the most fun- me or the girls. I love watching how Carly is with Anna and how Anna's eyes light up every time she looks at Carly. I could not be more proud of my kids. They are awesome. Carly has become so witty, her comments kill me. Tonight she was lying on the couch watching Jon and Kate (surprise) and she tells me she is cold. I said, "There is a blanket right behind you on the couch, silly." Her reply is "I'm glad to hear that." She ran around the house completely naked for the greater part of the day today. I let her because it will be a long time before she is an elderly lady in the nursing home where running around naked will finally be acceptable again. I hear her laughing and look over and she has taken stickers and placed one over each nipple and one over her bellybutton. This is not the first time she has done this but it never stops being funny. I would love to post a picture of it for you to crack up at but it seems that might be a bit inappropriate. Nothing new to report on the CP front. Sooner Start will be here Friday for our IFSP (individualized family service plan) meeting. This will outline goals for therapy, frequency of therapy... Anna is still doing great with her hand braces. I gave her a break from them today though. Heck, it's Sunday, we all need a day of rest. As for prayer needs/requests for this week- a lot of my friends (and recently me) seem to be having terrible difficulties in their marriages. It seems that good marriages are under attack. Pray for strength for your own marriage as well as those around you who are married. You never know when you might be the next one under attack.
Monday, June 16, 2008
We were driving home from my parents house tonight (past Carly's bedtime) and she started complaining about how she didn't feel good. She always complains of not feeling good when she is tired but she will NEVER just say she is tired. I told her that she would be going to bed very soon and then she would feel better. As we were getting out of the car I remembered I had purchased a new bathing suit for her earlier today. I said,"Carly, there is a surprise for you in the house." She says,"Did you go shopping for me today, mommy." I said, "Yes Carly, I went shopping and bought you something today." She replies, "Oh mommy, I feel better already. Getting surprises and shopping always makes me feel better." God help us, she is only 3...
Sunday, June 15, 2008
Kenneth and the girls headed out to the lake yesterday morning t o meet with his family and friends and I met them there after work. We camped at the Johnson Branch of Ray Roberts . We had a blast. Carly went fishing and caught her first fish. She was so proud and did not want to throw it back. She wanted Uncle Wayne to "throw it on the grill and cook it so I can eat it." She obviously has no clue about what goes on before we can eat fish. She wanted it on the grill while it was still wiggling and trying to get away. In her usual safety patrol fashion she coated herself with sunscreen on more than one occasion without having to be prompted by us. She got a beautiful tan but no sunburn. She didn't much care for swimming in the lake. She is afraid of drowning and does not quite grasp the concept of what the life jacket will do for her. Once she got past her fear of drowning she was then afraid the fish would bite her. It isn't just a healthy fear, it is more of a panic. I'll have to work on this one. Anna enjoyed herself as well. She was passed from one person to the next and just smiled as usual. We kept a baseball cap on her and sunscreen and I am happy to say she did not burn either. I on the other hand look like a lobster. It was really my first time out in the sun for any length of time this year and I don't think any amount of sunscreen would have stopped this burn. I tried but failed miserably. We got home and then Carly went over to play with Kenzie. They played in Kenzie's pool with her brothers. I was over sitting outside and talking to their mom when one of the boys turned on the water hose and drenched us. The war was on. By the time it was all over we were soaked and all pretty close to peeing our pants from laughing so hard. Kenneth grilled fajitas and we ate like pigs- again. The kids were both asleep and in bed by 7:15 and I think Kenneth and I will soon follow. Happy Fathers Day to any dads reading this. Hope you had a great one.
Tuesday, June 10, 2008
I got the greatest phone call this morning. I was on my way home from taking Carly to "school" and my cell phone rang. I did not recognize the number and silenced the phone but then something told me to answer it. I answered it and it was Debbie from Sooner Start. They got Anna's records from Dr. Miller and the records stated in black and white "cerebral palsy" so Anna is now qualified for services based on her medical diagnosis. We do not have to wait for 3 more months. I was so excited and could not thank Debbie enough. This is obviously not Dr. Miller's first rodeo because he knew exactly how to word things to get us the services we so desperately need. I had a perma-grin all day. The OT came out as promised and brought Anna's hand splints and her Bumbo chair. Yes, I know the Bumbo has been recalled so need to email me. The recall was mostly due to crappy parenting rather than a design flaw with the chair itself. I get so sick of parents who suck at parenting and then blame and sue everybody else for their stupidity. I mean really, if you place your child in a walker at the top of a flight of stairs is it really the walker's fault when your child tumbles down the flight of stairs? Stupid people get on my nerves. Anyway, enough of that tangent. So the splints are not near as cumbersome as I expected and Anna does not seem to mind them. She actually enjoys chewing on them. She does a good job of sitting in her Bumbo and is so proud of herself. I will try to get a picture of her in it and of her splints tomorrow and post it. I meant to get to it today but in the usual Jamie fashion, I ran out of time. I had to take Anna back to the Dr. today. Anna was still having fever and now coughing and wheezing and the antibiotics did not seem to be helping. So she has an ear infection on top of the bronchitis. She has new antibiotics and will have a repeat chest x-ray in the morning to make sure her lungs are not worse. It was such a weird thing- Kathy (OT) said she and Debbie would really like me to talk to the new neuro about some genetic testing for Anna because they think there is more going on than CP. I am all for the testing. Then at Dr. Klein's office he suggested we go see an endocrinologist and have testing done. He also feels we may need to look deeper. They both brought this up without knowing the other was thinking of it. So we will be taking Anna to an endocrinologist at Cook Children's and pursuing that avenue now also. The genetic testing could tell us a lot or it could tell us nothing- either way we have nothing to lose. It could tell us if she does have Angelman Syndrome and I could either know that is what it is or quit worrying about it if it is not. What a concept- quit worrying. I realize worrying is insulting to God because he already has things under control and does not need my help but I just can't stop. I had hell getting Carly to bed tonight. She went to sleep FINALLY at about 11:15. She is always insisting that she just isn't tired and that statement is usually followed by a yawn. Anna is so blessed to have Carly for a big sister. Carly is just so good with her and proud of her. She saw Anna's splints and was so excited because Anna can suck her thumb now and use all of her fingers. Carly notices everything and is so proud of all of Anna's accomplishments. Carly keeps saying the Bumbo looks like an elephant's butt. I want to know when the last time was that she got a really good look at an elephant's butt. Kids are so funny. I thought I had to work tomorrow but I looked at the schedule and I am off. The schedule- what a concept. I should really look at it more often. Well, my 3 cheese stuffed jalapenos are ready and calling my name so I must submit. I'm sure a good case of heartburn awaits me- who cares, they are yummy!
Monday, June 9, 2008
Saturday was mostly uneventful until the evening. Anna had a runny nose and watery eyes and kept sneezing all day so I finally gave her a tiny bit of benadryl at about 2. Around 5 I took the girls to McDonald's and then to see Kenneth. I made the comment how Anna was still kind of lethargic from the benadryl and looked a bit glassy eyed. I had left her in her carrier at McDonald's because she was sleeping. When we got to the fire station I took her out of her carrier and she was burning up. It is always super cold at the fire station so I thought she would cool off once out of the carrier. She did not. She got even hotter. 104 axillary to be exact. After Tylenol and Motrin she was about 103 axillary so we headed off to the ER. They drew blood, checked her for strep, and did a chest x-ray. Turns out she has bronchitis. So we went home with antibiotics and Anna is feeling much better. Her fever got really high again during the night Saturday/Sunday but has stayed low-grade since. She really had me worried. She was so lethargic and limp and hot and obviously not related to benadryl. She was so cute last night. She finally noticed a mirror hanging on her wall and if you hold her and stand in front of the mirror she will try to give kisses to the baby in the mirror. It was the sweetest thing. Yesterday was sad. We attended a funeral for the son of one of Kenneth's coworkers. His son was only 27. It was such a tragedy and really makes me grateful for my children. I am always grateful for them but even more so when I see how easily they can slip away. Life can be so unkind. Kenneth and I are still doing much better and I hope things continue to stay on the upswing. We are going to the lake this weekend to camp out with family and friends and I think it will be fun. I am not sure if they make sunscreen strong enough for Anna and I though- we are so pale!!!! Kenneth grew up going to the lake in the summer and I think he misses being out there. Hopefully as the girls get older we will camp out there more and more. Carly is our little safety patrol. She has already told me to be sure to bring life jackets and sunscreen. She cracks me up. She is so anxious and paranoid when it comes to safety. In the car she is constantly asking me, "Mommy, are you going over the speed lemon?"
Friday, June 6, 2008
Today held a bizarre mix of happiness and disappointment. The Early Intervention (Sooner Start or EI) came out for Anna's official evaluations. The two ladies who came out were a nurse and an occupational therapist. If you will recall from earlier posts, I think I explained how a child has to be 50% delayed in one area or 25% delayed in two areas to qualify for services. Well, Anna fell through the cracks. She is 33% delayed in fine motor skills and 15% delayed in communication skills so she does not meet either set of criteria. Don't get me wrong, I am glad my child is mostly on track, but I know she needs help and we do not qualify at this point. The ladies were so kind though and explained how the testing is kind of crappy because it looks at if a child can do a skill but not the quality of that skill. For instance, Anna can pick up and hold a toy but the effort it takes sometimes is exhausting for her and it may take quite a few misses of the toy to finally get it. I am disappointed that she cannot get therapy now but the EI ladies spent quite a bit of time with us today showing us things we can do to try and help Anna right now. They are also going to bring us some braces/splints for Anna's hands to try and get her to quit holding her thumbs inward in a fist. The occupational therapist (OT) thinks Anna's deficit is mostly in the "motor planning" area. The OT will help us as she is able even though we do not qualify. She was so kind. The plan is for them to come back out at 9 months and reevaluate. They feel that she will no doubt qualify at that time. If for some reason she doesn't they will petition for her to receive services anyway based on their opinions. They will have to say that they feel that even though she can pass the tests that without intervention she will suffer and likely regress or fail to progress. They both firmly believe this will be the case, that she will fail to progress without intervention, so I feel they will do what it takes to get her on their services. They said that at 9 months a baby is expected to do so much with fine motor like stacking blocks, etc that they do not feel Anna will be able to do so they feel she will qualify without a problem at that time. So, like I said, it is a double edged sword. I am happy she is doing well but sad that she cannot get the help she needs right now to keep her from falling further behind. It just seems so crazy to make a child fall further behind to be able to intervene when early intervention is the whole point of the program. I will not harp on it though, I feel fortunate to be connected with people who will help us when and how they can even if the numbers do not add up. Kenneth and I actually went out on a date without the kids tonight. It was so nice and refreshing. We are mending the wounds and getting back on track and for that I am so grateful. We were too busy worrying about the kids and forgot about each other. I felt angry and he felt neglected. Neither was a good place to be. We had a great time tonight though and hope to repeat a date night at least every other week to keep us from growing apart again. We are a family and we must remain that way. We promised God and we promised each other.
Tuesday, June 3, 2008
So I was taking Carly to school yesterday and she says, "Mommy, I don't ever want to grow up." I say to her, "That's o.k. You don't have to grow up if you don't want to." She says she would not like to get any bigger than 4. She doesn't even want to ever be 5. I asked her why and she told me it was because she doesn't ever want to be a mommy. I told her that just because you grow up doesn't mean you have to be a mommy. Being a mommy is a choice and that choice will be up to her. I then asked her why she doesn't ever want to be a mommy. She says, "Because I don't ever want to have to stay in the hospital forever like you did." My heart broke. I explained to her that not all mommies have stay in the hospital for so long and that hopefully she would not ever have to do that. She didn't seem to believe me. Every time I think the effects of my hospital stay are over I see that they are not. I guess I will not ever know how big of an effect all of this has had on her. It makes me so sad. Most little girls dream of growing up and becoming a mommy, my child is terrified of it. She finishes the conversation by telling me that "2 kids is enough because I don't ever want to lose you again." Yeah, kids are resilient but they have a memory like an elephant. I just want to erase all of the bad memories from her but I cannot. Kenneth and I had a nice conversation last night. We communicated more in 1 hour than we usually do in a month. We talked about things that matter and I feel like we are finally gaining some ground. Men and women are just so different and no amount of fighting is going to change that. Hopefully we can learn to understand each other better as time goes by. I see why "Men are from Mars..." was so popular. Kenneth finally gets why all of Anna's problems upset me so much. He finally understands why I feel responsible for Anna's problems. I put it to him like this- you were driving and you accidentally hit a kid that was riding her bike down the street. The child recovers for the most part but is left with a physical disability. Every time you see that child you feel so bad because what if you had paid more attention while driving or slowed down or done something differently. What if doing something just a little differently had kept you from hitting that child and forever changing her life. And you will never be able to go back and change what has been done but every time you see that child's face you will wonder, what if I had only...
Monday, June 2, 2008
Time in the morning to do something besides chase my tail- what a concept!! I am going in to work late today and I got up in enough time to deal with kid issues but so far there are no kid issues so I have some peace and quiet for myself. It is so refreshing to have quiet. It seems there is always somebody talking or the tv on or some sort of noise and I miss the days of quiet. Don't get me wrong, I love to be around people but sometimes I just need peace and quiet. It is so much easier to gather my thoughts that way. We had a pretty good weekend except for Friday. Friday held another disagreement between Kenneth and I. They seem to be coming closer and closer together and I hate it. We used to not fight and rarely disagreed and now it seems that is all we do. I know marriage is supposed to be work but geez, this is wearing me out. I know he has to be worn out and worn down also. There are just so many issues going on between us and every time we seem to find a do-able solution to one something else rears its ugly head. For better or worse has taken on a new depth I never imagined sinking to. For us it was usually for better and that was so nice and easy. Now it is for worse and I do not like that so much. Anna was cranky Friday and Saturday but finally returned to her smiley self yesterday. Carly was great all weekend. Kenneth was on duty yesterday so the girls and I went to church. Our preacher is incredible. I love that he is so honest and not afraid of offending people by preaching the truth. I think sometimes people need to be offended in order to "get it." He is unashamed and so full of truth. I wish there were more people like him. We are so blessed to have a preacher like him in such a rural area. I guess I better shovel in a few bites of breakfast and then get Carly up and dressed for school. Hope this day finds you well. If you have a few spare moments today and tomorrow please pray for my friend Dana. Pray for peace for her and her family. Thanks!!