Today we went to the developmental pediatrician. Before I get into that, let me just say that Maddy surprised me by loving, I mean LOVING, formula. The first time I gave it to her she ate a 4 oz bottle under 10 minutes and then had the most happy, amazed look on her face at the end. As my mom said, it was like she'd just drank a milkshake. Funny, funny. Anyway, I'm glad that getting that going was not the headache I thought it would be; however I wonder if it is making her sleeping patterns weird. Last night I was up every hour until 3 a.m. She would never go into a deep sleep so every time her paci would fall out it would wake her up and I'd have to go in and rearrange her. Sometimes she was just crying with the paci still in her mouth. Really, really weird. I fed her at 1 a.m. but she wasn't that hungry. She maybe ate an ounce so that was definitely not the issue. We'll see what happens tonight. Not sleeping is really unusual for her. She usually kind of have wakes up and fusses just a little around 3 in the morning but goes right back to sleep and that's it. She was up at 5:30 this morning wanting to eat. Anyway, enough of that. On to the report.
I wasn't sure this appointment was going to be worth my time. I don't know that I found out anything earth shattering but I would say it definitely ended up being at least interesting. She evaluated Maddy's motor, language, and congnitive skills. She also looked at her weight and joints etc. She thought that putting Maddy on the formula was a very good plan. The girl doesn't have a big body but her head is charting at a normal size so she has a big head for her body which is funny cause her head seems tiny to me too. She always measured like that on sonograms as well. Right length, right head size for gestational age, but small torso. Anyway, that is always a relief to hear that her head looks good. :) Her motor skills evaluated at about a 2 1/2 month level. The doctor was really impressed with that given her issues and thought that her ability to reach up and grab things was just wonderful. She said a lot of kids with this condition can't reach up against gravity. Her language skills evaluated at a 3 1/2 month level. She said that wasn't too far behind, don't worry about it, and there is a possiblity that she is a little behind in that because of the hearing issues we've had. Her cognitive skills also evaluated at 3 1/2 months on the chart because a lot of that is tied to the motor skills. The doctor said she felt Maddy was right at 5 months on the cognitive level but it did not come out like that on the paperwork because she had to dock her some points for her motorskills. So it looks like she is doing well and the doctor was really pleased with where she was at. She thought her neck looked great from where it was when she saw her in NICU. We are supposed to go back in four months. Some other interesting things I learned from her were about what types of equipment Maddy should be using to develop motor skills. I told her that we mostly let her play on the floor because I'd read somewhere that that was the best thing to do for babies to help them develop motor skills and sense of space. She said that was absolutely true and that we should keep having most of her play time on the floor. I also told her that we'd gotten the jumper seat out and tried her in that thinking maybe it would help her legs. She said DO NOT DO THAT. I guess it is not the best thing to put any baby in because while it really develops some muscles it keeps them from developing others and the muscle development needs to be coordinated through all the muscle groups. She said it is especially harmful for babies who already have issues. She said swings are okay but limit the use. I told her we only put Maddy in the swing while we are eating dinner and she said that we should keep doing that. Another thing she said was that her tethered cord surgery might help with the tightness issues she is having in her hips. Right now she cannot put her legs into what I call the "Indian style" position but the doctor called the "tripod position", a much more pc description. :) So that is really going to affect her ability to learn to sit. The cord surgery might imporve to mobility in her hips and solve most of the problem. If not we will have to work with PT and OT to figure out what to do to help her with sitting. The flip side is that some of the tethered cord surgeries have to be redone because of scar tissue and the scar tissue retethers the cord so that they have to go back in and release it again. She recommended that we ask the doctor about his rate or recurrence before the surgery. She also suggested that we have Maddy's hips reevaluated to make sure there is no dislocation but only after the tethered cord surgery because she thinks that will change some things. She also recommended that I contact ECI again for developmental intervention and nutritional intervention. I had called ECI to see about physical therapy when we first brought Maddy home because they come to your house to do it. I ended up not going with them though because our insurance worked better with the therapy that we are doing and because someone told me ECI only does therapy to make them get ready for school so they might not work on some things. Anyhow, it is true that they don't duplicate services so I couldn't get them to come. I can probably get them to come for the other stuff though. The debate I have with myself is that it is a government program and do I really want them coming into my home? I think government programs are great, but I guess I just have an ingrained Republican mistrust of too much government interference in my private life. :) I am going to investigate and see how the program works and what the requirements are for being in the program before I decided what to do. Any thoughts about this from anyone? I'm sure it could be a good thing, especially if Maddy has hearing loss because they have people that can come and teach you different ways to interact with her to help her with that and speech development.
I'd better terminate this post because it is getting really long and I don't have any pictures to post to give people a break from the endless text.
I wasn't sure this appointment was going to be worth my time. I don't know that I found out anything earth shattering but I would say it definitely ended up being at least interesting. She evaluated Maddy's motor, language, and congnitive skills. She also looked at her weight and joints etc. She thought that putting Maddy on the formula was a very good plan. The girl doesn't have a big body but her head is charting at a normal size so she has a big head for her body which is funny cause her head seems tiny to me too. She always measured like that on sonograms as well. Right length, right head size for gestational age, but small torso. Anyway, that is always a relief to hear that her head looks good. :) Her motor skills evaluated at about a 2 1/2 month level. The doctor was really impressed with that given her issues and thought that her ability to reach up and grab things was just wonderful. She said a lot of kids with this condition can't reach up against gravity. Her language skills evaluated at a 3 1/2 month level. She said that wasn't too far behind, don't worry about it, and there is a possiblity that she is a little behind in that because of the hearing issues we've had. Her cognitive skills also evaluated at 3 1/2 months on the chart because a lot of that is tied to the motor skills. The doctor said she felt Maddy was right at 5 months on the cognitive level but it did not come out like that on the paperwork because she had to dock her some points for her motorskills. So it looks like she is doing well and the doctor was really pleased with where she was at. She thought her neck looked great from where it was when she saw her in NICU. We are supposed to go back in four months. Some other interesting things I learned from her were about what types of equipment Maddy should be using to develop motor skills. I told her that we mostly let her play on the floor because I'd read somewhere that that was the best thing to do for babies to help them develop motor skills and sense of space. She said that was absolutely true and that we should keep having most of her play time on the floor. I also told her that we'd gotten the jumper seat out and tried her in that thinking maybe it would help her legs. She said DO NOT DO THAT. I guess it is not the best thing to put any baby in because while it really develops some muscles it keeps them from developing others and the muscle development needs to be coordinated through all the muscle groups. She said it is especially harmful for babies who already have issues. She said swings are okay but limit the use. I told her we only put Maddy in the swing while we are eating dinner and she said that we should keep doing that. Another thing she said was that her tethered cord surgery might help with the tightness issues she is having in her hips. Right now she cannot put her legs into what I call the "Indian style" position but the doctor called the "tripod position", a much more pc description. :) So that is really going to affect her ability to learn to sit. The cord surgery might imporve to mobility in her hips and solve most of the problem. If not we will have to work with PT and OT to figure out what to do to help her with sitting. The flip side is that some of the tethered cord surgeries have to be redone because of scar tissue and the scar tissue retethers the cord so that they have to go back in and release it again. She recommended that we ask the doctor about his rate or recurrence before the surgery. She also suggested that we have Maddy's hips reevaluated to make sure there is no dislocation but only after the tethered cord surgery because she thinks that will change some things. She also recommended that I contact ECI again for developmental intervention and nutritional intervention. I had called ECI to see about physical therapy when we first brought Maddy home because they come to your house to do it. I ended up not going with them though because our insurance worked better with the therapy that we are doing and because someone told me ECI only does therapy to make them get ready for school so they might not work on some things. Anyhow, it is true that they don't duplicate services so I couldn't get them to come. I can probably get them to come for the other stuff though. The debate I have with myself is that it is a government program and do I really want them coming into my home? I think government programs are great, but I guess I just have an ingrained Republican mistrust of too much government interference in my private life. :) I am going to investigate and see how the program works and what the requirements are for being in the program before I decided what to do. Any thoughts about this from anyone? I'm sure it could be a good thing, especially if Maddy has hearing loss because they have people that can come and teach you different ways to interact with her to help her with that and speech development.
I'd better terminate this post because it is getting really long and I don't have any pictures to post to give people a break from the endless text.
Comments
Anyway, sounds like y'all are doing great with her! Praying for her growth, upcoming treatments, and surgery.
also, still praying for you guys and little miss! It sounds like youre still getting good news through the pain of all these appointments. Let me know how we can help!
oh, and we got lana's swim suit at janie & jack...on clearance--otherwise we wouldn't have been able to afford it! I think i might go back and get another one size 12-18 months so she'll be set for next year too! (and it'll be cheap!)