Tummy time exercise

So I have been working really hard with Cooper on tummy time and building upper body strength. Here are some pictures of his hard work. This aren't all the cutest pictures, but they mean the world to me. I put him on his arms and he was able to hold the position briefly. This is huge for him as a week ago, he could not hold weight on his arms at all. As you can see by some of the faces, it is a lot of work!

ECI evaluation

Cooper's had his evaluation today with the physical and speech therapists. It went really well, better than expected. The speech therapist was really impressed with Cooper's social development. This came as no surprise as he is quite the charmer. She said that he was doing well with his cognitive skills and was in the 3-4mo range and in the 4-5mo range socially. The physical therapist said that Cooper was on the lower end of the range as far as the motor skills go, but still in range. She said that she wasn't sure why be showed the side preference, but felt that it was more of a delay on the left side versus a physical problem with that side. While Cooper automatically qualifies for ECI, he was not enrolled at this time. He was placed in the follow along program through which they will correspond through mail and over the phone unless an issue comes up. If something does arise, they will come back out and re evaluate at that time. The pt gave us suggestions on what to do to strengthen his muscles. They told me that there wasn't anything that they could do for him that I couldn't. So, I will just have to be very disciplined and work with him daily on the upper body strength. They feel that he is just slightly delayed because he had such a difficult start. The pt said she felt by a year old, he would be caught up. She felt this is all simply a delay and not a brain problem. She said while he does have the side preference, he is not showing the rigidity of a child with cerebral palsy. It is a huge relief that this is something we can put in the back of our minds for now. My hope and prayer is that by the end of the year, we won't even be able to tell how rough of start he had.

4 months old!

I can't believe Cooper is 4 months old, but at the same time, he has been through so much in such a short time. We are so incredibly blessed to have him and are reminded of that daily. He is getting so big, but he's still very small. He has started to teeth, so remember us in your prayers. The reflux symptoms are generally worse when babies teeth, so it has been rough. He has been waking between 4 and 5am screaming for at least an hour. This is really beginning to take a toll on up all. We elevated his bed tonight, so hopefully that will help and I am going to move to the recliner after he wakes. We tried this last night and it worked, so hopefully it will again tonight. The only trouble with that is we have to take him off the monitor because it won't reach the chair. We realize teething is a battle for all parents and know we will make it through. This is his four month photo taken in a tree at the park on Saturday. He looks so sweet!

ECI Meeting #1

So on Thursday the nurse that will be Cooper's ECI service coordinator came over to meet with me. She was so nice and very thorough. She stayed for well over 2 hours. There was allot of paperwork to fill out. We also went over all of Cooper's history including the pregnancy which was quite extensive. She said that Cooper should automatically qualify for services because he has had FTT. We just have to see what the pedi writes on the script. I'm pretty sure I can get the specialist to write the FTT diagnoses if the pedi does not as Cooper's said has always been one of his main concerns. She played with Cooper and agreed that his upper body was weak. She also commented on how he still keeps fists and stayed that his hands should be open most of the time now, something I had over looked. She noticed his preference for the right hand and pointed out how he would easily open his right hand to a toy, but not his left and how he was much more aware of what he was doing with the right hand. They can hopefully work to strengthen his left side and bring more of a balance. We also found out they would file on our insurance and we would not have to pay for the services. Cooper will have a full evaluation by an physical therapist and a speech therapist on Tuesday. After that, we will set up a treatment plan. I am very anxious and excited. I do have fears that getting the script may be a bit of a battle. The nurse said that until he gains that upper body strength, he won't be able to sit up or crawl. I really just want to get the ball rolling so that we can learn what to do to help him. The earlier the better. Please pray that everything works out and we can get Cooper the help I believe he needs.

First bites

So the doctor also told us that we could start solids. Cooper had his first feeding of rice cereal with breast milk and applesauce on Wednesday. He was not sure about it. I pretty sure most of it ended up on the bib. Hope you get as big of kick out of it as we did. Enjoy!

4 month well check

Cooper had his 4 month check on Monday. He weighed 11lbs 8oz and was 25 1/2in long. He is now in the 3% for weight and the 75% for height. Since there was no drop off in either area, he is no longer considered failure to thrive. His ear is getting better, but is still bothering him some. Dr. Mike also evaluated his development. He said that he was actually doing pretty well. He said his tone is a little low and his head is still quite wobbly so he gave me the script for the pt. He said that he has a few red flags for Cerebral Palsy, but would not diagnose him at this time. He said we would reevaluate in a couple of months and consider an MRI if needed at that time. The social worker with ECI comes in the morning. Cooper probably won't qualify for therapy now that he is no longer ftt, but they will still do the eval and can give me some exercises so I can work with him. It may sound strange to say, but I hope he does qualify so he can get the help and catch up and get back on track. Of course I don't want anything to be wrong with Cooper, but I don't want to delay intervention or treatment if it is needed. I guess will just have to see.

Blessings Abound

Yesterday I decided to take Cooper in for sick time because he cried all day on Thursday. I am so glad I did because it turns out he has an ear infection. Poor little guy. Well, before we drove home, I decided to stop in at Hobby Lobby so that we didn't have to get right back in the car for another hour. Cooper fell asleep in the sling so I just browsed while he napped. When I was about to check out, he woke up screaming. He wakes up and expects to eat, no if, ands, or buts about it. Well, as much as I wanted to whip it out right there in the middle of the store, I didn't. So Cooper continued to scream while I waited in line, which was very long might I add. I write my check, holding my screaming baby in the other arm and the cashier asks for my ID. I look in my bag and realize I left my wallet in the car when I had gotten gas. I ask if I could just tell her my number, but of course, she has to see it. I say I will go to my car and get it. Then, the woman standing behind me in line says, "you know what, just let me get it. I have four kids and have been there; go feed your baby." I started crying as it has been a rough few days. I was overwhelmed by her kindness and selflessness. It was truly a blessing for me that day. So, I will be passing the blessing on to baby G. Amy, I am sending a check for what I didn't spend at Hobby Lobby to go towards your floor. It is so amazing to see God work through everyday people in extraordinary ways. We have certainly seen his hand at work this week with Amy's story. Any time you receive a blessing, remember to pass it on.

Our latest issue...

First off, sorry for the lack of posting as of late; we are all sick in the Schiwart family. Cooper is recovering from a nasty cold, I am taking a Z-pack for bronchitis, and Curtis is at the doctor as we speak. Anywho, lately I have become increasingly concerned about Cooper's muscle tone or should I say, lack there of. I am with Cooper all day long, everyday, so I usually just think about what is normal for him versus not what is "normal". Well, last week, I see a baby that is only 10 days older than Cooper riding in the cart at Wal Mart, and his mother told me he is trying to crawl. Now I realize this is the complete opposite end of of the spectrum and this little boy is quite advanced, but it certainly got me thinking. Then, I see a picture of a baby boy born the same week as Cooper in which he is holding his self up on his arms. I thought, wow, Cooper should be doing that. So, I put him on his tummy and place him on his elbows; he immediately collapses, unable to hold his weight on his arms. I go to The Baby Book by Dr. Sears for a reference of what Cooper should be doing. I find that not only is he not supporting himself on his arms like he should but he also doesn't bare weight on his legs either. He should be able to sit with his arms propping him up and straighten his legs to stand while held. In fact, the only time he really uses his arms and legs is when he is arching in pain from the reflux. From what I have read, lots of reflux babies are hypotonic and need therapies to work through these issues. It make sense since he has had fft, but it still is hard that he to think that he is behind developmentally as well. I called ECI and made a referral and a social worker we call me next week and we will set up an appointment for an evaluation. I hope that it is nothing or something that we can work through with pt/ot. They also said they can work with us with any other issues that might come with the reflux, such as feeding aversions. They seem very nice and I am trying to have a positive outlook. Well shall see.

Our trip

We had a great time in Coppell and Austin. These are a few pictures from our mini vacation.

Appointments

Cooper had his appointment with Dr. Hadeed at Cook's on Friday. It went well. He was very pleased with Cooper's weight gain and continuing improvement. Fundoplication wasn't even mentioned even though this appointment was originally planned to discuss surgery and speak with a surgeon. They did the sweat test to check for cystic fibrosis and I just got the call letting me know it was negative. Praise be to God! He said the same thing as the pediatrician about the seizure. Hopefully it will never happen again, but if it does, we will have to do further testing. We go back for a check up on May 2 and hope that the good reports keep coming. I had my appointment with Dr. Silverberg on Monday. It was just a consult to make a plan. It was pretty much as I had expected. I will continue to enjoy the natural suppression of the breastfeeding for now and take continuous birth control to suppress my cycles after that. He said I either need to be pregnant, trying to get pregnant, or completely suppressed. When I asked about the future, he said it was reasonable that we try on our own for a couple of months, but only for a couple of months and then talk about our options. He said he would put me back on the injectables in a heartbeat. It certainly gave Curtis and I a lot to think about. But we don't have to make any decisions right now. It is good to know we have a plan on how to manage things until that time comes. Our visit was very nice. It was good to see everyone again and at a much happier place. We are so grateful to have found Dr. Silverberg and the whole TFC staff. They are truly wonderful people.

One year ago...

You were created. On this day, God began forming you in my womb. How wonderful a blessing you are. It is hard to believe you have been in my life for a year now and at the same time I can't really remember life without you. I am so glad you are being healed. You are growing so strong. I love you my sweet baby boy. Happy birthday!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you, when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. ~Psalm 139:13-16

Somebody please say "April Fools" already!

Wow, what a day. It started out really good. Cooper had had a really bad evening yesterday, refluxing like crazy. But, this morning he woke up happy as a lark. We went to watch Andrew this morning while Tracey went to the doctor. It was a breeze. Andrew slept until a few minutes before Tracey got back and the woke up happy. She brought us home lunch. Cooper had not taken a nap all morning which was quite strange. I decided to try and set him in Andrew's highchair while we ate and he seemed to like it fine. While we were sitting there eating I was talking to him trying to keep him happy when he started to shake. It was very fast and very strange and I thought to myself, "what just happened?" He acting normal for a second and then did it again. This time, I turned and looked at Tracey and she with wide eyes at me. I said, "I think he just had a seizure!" He then did it once more. His face had no expression, but his eyes did not roll back. He snapped out of it a resumed smiling and being happy. I jumped up and ran to the phone, not knowing who I was going to call. Not 911, that is a joke in this town. I called my mom. I don't know why, that is just the number my fingers dialed. After telling her what had happened, I realized I should call the pediatrician. The receptionist said if he had a seizure I needed to take him to the ER. I said our ER wasn't very reliable, so she asked the nurse what I should do; she said "take him to the ER". I didn't know what to do. Thankfully our pedi called as soon as he heard and said if he seemed fine now, just to bring him in. So off we went. Tracey went with me so I didn't have to go alone and I could watch Cooper. Thank you! When we got there, they ran lots of blood work. They took so much blood from just a heel prick. He was in so much pain. I was rather upset that they didn't do a vein draw. He has had that done before with much less pain. Then the pedi came in and asked lots of questions. He checked his soft spot and his reflexes and they were all good; the blood work all looked normal as well. He came to the conclusion that he probably had a seizure. He said it is one of those things that can only be diagnosed in the hospital when seen and document, which just doesn't always happen. He said when a child does this, there is only two options, to do a neurological workup, ie EEG, MRI of his brain, or wait and see if he does it again. He suggested we wait. He said if there is a problem, it will happen again. He would have to be sedated for the tests and we really don't want to have to do that if it can be avoided. He said it his probably one of those things we will never no why it happened. It was so scary. I am so glad were are going to Cook's on Friday. I thank God he is ok right now. On a much happier note, he now weighs 10lbs 10oz. That is a whopping 12oz gain in only 2 weeks. Way to go Coop!