Monday, June 23, 2014

Ryan's Journey

Ryan is officially out of physical therapy! Although the therapist did not release her or advise it, I just had to go with what I felt was best for us and I felt it was time to stop therapy. Overall our therapy experience was not the best. I have not said much about it lately because it was kind-of a sore subject but has a happy ending at least.

Little weak on the left side
 We started out in December looking for help with Ryan because she had developed a bad habit of scooting and was not showing much interest in walking and had trouble holding weight on her left leg since that was the leg she was keeping tucked under when she would scoot. The therapist kind of threw us for a loop with her initial screening results. She basically scared the crap out of us with worst case scenarios. She said Ryan was showing so many signs of delays that she wasn't sure what all she had wrong with her and that we needed to have her screened for occupational therapy and genetic disorders also. I point blank asked her "so are you saying she may not walk ever?" and she replied "I really don't know at this time but possibly not". That was not what I was expecting. I blogged some about this then and had several people private message me about how Ryan sounded like she had what their child had. I remember sitting at work on the phone with Nathan crying because I was in shock. She just needed some help with her leg - it was not any deeper than that - or was it?

I went to her check-up with her pediatrician and he said he really didn't think there was anything wrong with her at all. He said he thinks she just needs a little help with her leg and that she would for sure walk and he was unsure what the therapist was seeing to come to her conclusions. He said he would go ahead and do the referral to Arkansas Children's Hospital for genetic testing to put everyone's minds at ease but he really doesn't feel it is necessary. In the meantime we got the initial screening back on Ryan where they had her skills at a 2 month level when she was 16 months old - I did not like this at all. She was obviously WAY more advanced than a 2 year old. She could do almost everything except walk and had trouble getting up sometimes because of her weakness on her left side - which is all from her scooting habit.

We went to the genetic testing and they said they had no idea why she was even there. He said she looked totally normal other than some leg tightening that should be resolved with therapy. He said he couldn't believe she was even referred there since she was talking so well and meeting all other milestones. He said if she seemed delayed in 4 months to come back but if not then he saw no reason to see her again. That was a huge weight lifted, but it also should have never been a worry according to him and her pediatrician.

We started therapy 3 times a week and it was rough. She was seen at daycare 2 times and I would take her one day a week so I could observe her. Ryan would cry the entire sessions - sometimes until she would vomit. She HATED it - she didn't want any of them touching her. Just like Noah, this was a time in her development where she wanted only Momma all the time - no one else. She was fine with Daddy and her sitter too if I was not around, but she just really wanted me then. Everyone kept telling me she would get used to it and stop crying and after 4 months she was still just as bad. She would start crying as soon as we would walk in the door to the therapy office and not quit until we left. She was doing a little better at daycare with the Physical Therapy Assistant Sara that she saw there - she was crying a little less but would still immediately start crying when she heard Sara knock on the door. As a mother, this was VERY hard.

Momma working with Ryan on her therapy ball at home :)
One of the days I took her to therapy the therapist took her in the other room away from me, Ryan was screaming of course, and I could hear her in the other room saying things like "you just need to learn to be away from your mom" and "crying is not going to help so you need to just stop". I was holding back the tears and texting Nathan what she was saying - he was not happy to say the least. If any stranger (this was the second time this particular therapist had seen her so she was a stranger) takes my child from me then I fully expect them to cry and throw a fit. Then she made Ryan walk to me but wanted me to let her cry at my feet and not pick her up - I have no idea what this was supposed to prove but it broke my heart. Then she asked me how we disciplined Ryan at home. I told her she got time-outs or I ignored her if she was throwing a fit and I would spank her hands if the situation warranted it. She said that all Ryan was doing at therapy was throwing a fit and I needed to discipline her in the same way there as I would at home. I will never discipline my child for throwing a fit because a stranger took her from me. Ever. I was ready to end therapy that day, but I didn't want to make any rash decisions out of anger. I told them that day that I would not be coming back to observe and that I wanted all her therapies done at daycare - that way I wouldn't be expected to discipline her and Sara would be doing the therapy and she is getting along with Ryan better than anyone. The therapist ended up sending a list to her pediatrician of all her delays (half of which she can do but doesn't want to do for them because she is not comfortable with them) and that she has severe separation anxiety. I was not happy with this. Neither of these are true and now they are in her medical history - it is just causing problems and could cause insurance issues later on. She does not have separation anxiety - she doesn't like strangers, there is a difference.

In March Ryan was walking well and I wanted to start the transition of getting her out of therapy. The therapist said she wasn't only there to walk and that she was still very delayed for her age. I looked up the age appropriate guidelines that my pediatrician told me to use and she was fine with all of them and even doing some things advanced for her age. I asked to see the goals that she sent to her pediatrician (which started out as 8 goals) that was now 25 goals and she was doing all but 4 of them and the others were on the list for a 24 month old and she was 18 months old. The therapist said she needs to see videos of them or she was not going to mark them off. So, I videoed her running, bending to pick things up, kicking a ball, etc. She said she would reevaluate her at the end of that month and let me know what she thought. The end of that month she said her leg was still tight and needed further therapy. When she was doing her therapy on my leg to show me how to do it to Ryan at home she said my legs were also tight. I don't notice anything with them and walk fine so I don't think this is an issue.

She is a great climber :)

She loves to jump at the jump houses :)
Ryan was still being seen by Sara at daycare and she was not crying for the most part for her, but still had her moments. Then the entire staff of the therapy office went out of the state and Ryan wasn't seen for 2 weeks. I was watching Ryan play with her cousin who is three and a half months older than her and her other cousin who is a year and a half older and she was doing everything that they were doing. She was running, climbing, jumping, and everything else little kids do. I just think it is time for her to be done and move on and see what she does. She will have her 2 year check-up with her pediatrician soon and he said he would evaluate her for any delays then.

I just keep getting this gut feeling to take her out of therapy. I am not sure what it is, but I learned long ago not to ignore my mothers intuition. I tried to not let my conflicts with the therapist play into my decisions in any way.  I did consult with her pediatrician and some other therapists first and they all said there was no harm in taking her out and watching her for delays. So that is where we are now. The experience was not all bad though. Ryan can walk and run and jump and do everything any other kid can do and I fully believe this is because she was worked with weekly. The Physical Therapy Assistant Sara that she saw the most was amazing. She really worked hard to win Ryan over and develop a relationship with her. She is part of Ryans history and we are very thankful for her.

Sara and Ryan on her last day :)
Ryan is going to do great things in this world and we may not even remember all this one day when she is running track or playing softball - but I wanted to make a note of the experience for her. Thank you to everyone for all the prayers over the last 6 months. They were felt and heard. We had so many awesome people asking about her everywhere we went. She is one loved little girl.

"My flesh may fail, my God you never will". Thank you God for healing our Ryan.

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