Feeling hopeful

I know that I have been a terrible blogger lately. Honestly, I haven't been in the best of moods. Life has been taking its toll on me physically and emotionally. I have been in a bad mood. Life stinks sometimes. It plain isn't fair. But I saw a light yesterday afternoon, a much needed one that helped me shift my perspective a little.

Kiya had her first appointment with her Birth to 3 therapist yesterday afternoon.  I was really not looking forward to it. Kiya had been off and on whiny all day and really we have been there done that before with not much success. Boy was I wrong.

I LOVE our therapist. She let Kiya come to her and took it slow. She wasn't over bearing and while the hour we were together consisted of zero physical therapy activities it was the best hour. She played cars with Kiya and they laughed together. We all sang Ring Around the Rosie and If your Happy and you know it. It was amazing.

So why so great if we did zero therapy??? Well, because I am actually feeling hopeful. This hasn't happened in awhile. Our therapist was encouraged by all the things Kiya was doing. She felt Kiya was doing all the things that she should be physically and that her biggest problem was her ankles. She rolls in on her ankles while standing up. More so on the right than the left but it is obvious. This has been on the radar before but we had no clear solutions. That changed yesterday.

She emailed me last night the name of the braces she recommends, the name of the company here in town that makes them and a form for our doctor to sign so we can get these custom made braces. I dropped the form off at Kiya's pediatrician's office for her signature and then called the company that makes the braces to see what we needed to send them to get an appointment. The woman asked for all of our info, said bring the signed form in and then promptly scheduled us for an appointment for next week. I was floored. I am so excited to get these braces and see the progress.

Our therapist also suggested getting Kiya an easel or whiteboard that would force her to stand up more vertically with her hands up versus standing at a table with hand down.  She also thought it would be a good idea for Kiya to have a big wheel type tricycle, something with pedals. This will help her get used to alternating the use of each leg. She currently if we don't force her will climb up the stairs pushing up only on her right leg. She can push up just fine with her left leg she just doesn't.

I feel like for the first time in a long time we have a plan. A real legitimate plan to help Kiya catch up and eventually soar. We have this amazing therapist. We have Shriner's hospital and we have some new friends that have helped make this journey a little more tolerable.

I am ready to jump in and get started. I hate that all of this is happening but it is. Kiya is going to have a lot of changing thrown at her in the next few weeks and she is going to need me to be strong for her as she adjusts. I worry she will be mad at first. I take that back. I know she is going to be mad for awhile. I am not worried about the ankle braces as much as they are flexible and have velcro and she loves having her shoes and socks on. It is the cast that worries me. I know she will bounce back but she is going to be mad. She will have to learn to do some things differently but I know she will do it. The first cast will be the hardest on all of us but together we will get through it.

I think I may be ready to make lemonade with all the lemons life has thrown our way lately. I know this is going to be a bumpy ride for all of us and there will be good days and bad but I am hopeful. We finally have a path to follow that will hopefully lead to nothing but great things for Kiya. I dream about seeing her run around outside. I look forward to the appointment that tells us this is her last cast and she will be fitted for a brace. I look forward to Kiya truly achieving her potential and being a kid in all ways. She is such an amazing little girl and I hate that a curvy spine and some funky ankles are holding her back.  I am grateful for Kiya's energy, intellect, sweetness, creativity and that sweet little voice of hers.

Watch out world Kiya's is coming better than ever and she is a force to be reckoned with :)

Birth to 3, Ortho update and frustrated

Kiya had her Birth to 3 evaluation on Tuesday. It was over nap time but she did great. She was quieter than normal but she did show off a little too. She followed simple directions, like go get your baby or can you bring me the ball, etc. She completed a shape puzzle, she sang the ABC song, kicked a ball, rolled a ball, she pointed to pictures in books, etc. She even used her push walker toy when asked and dumped out the contents of a small bottle and put them all back in.

The Early Ed Teacher was impressed with Kiya's problem solving skills. The physical therapist thought Kiya was making nice progress. She commented on her rolling in on her ankle and gave us some suggestions. She also noted that since Kiya has only been crawling for a few months, she may not be ready to walk just yet. She was excited that Kiya will walk a few steps independently between her chair and another person or between two people.

So now we wait for the report and see if she qualifies for services.

Ortho update and frustration are tied together. We had Kiya's ortho appointment yesterday and if the doctor was in the room for more than 5 minutes that would shock me. He called her Anna and was VERY brief. He said he was pessimistic that her curve would get better. He mentioned body casting and back braces and asked what we thought. I immediately asked what body casting would entail and got no answer. The doctor responded with well we can wait 3 or 4 months, repeat x-rays and make a decision then.

I expressed my concern that Kiya is making progress on walking and catching up to her peers and asked how either of these treatments would affect her mobility etc. Again no response. We got the wait and see, a handshake and he left. That was it. Nothing else. I was really frustrated. I had more questions than answers at that point.

Why is it that specialists have to be pompous jerks? Seriously, this is the second specialist we have seen that has ZERO bedside manner. No wonder Kiya wound up screaming at him.

I do believe we were the doctor's last appointment after a VERY long day and with Kiya screaming it was probably just enough to make him want to run fast out of that room.

We did discuss Kiya's right foot also. He wasn't concerned. Yes she rolls in on her ankles but he doesn't think it is that bad. The physical therapist disagrees and recommends an ankle brace or having Kiya wear her walking shoes in the house. So we are going with that. She has been wearing her shoes more in the house as she is less likely to roll in on her ankles with the extra support.

Once we got home, I did some research online about types of braces, etc. I know typically not a good idea but in this case it made me feel better. The braces aren't nearly as scary as they sound and some even are designed to only be worn at night. Most modern braces will allow her to have full range of motion and just be a kid. This was reassuring. There is one scary looking old school brace that I want nothing to do with but if that is what is best we will cross that bridge when we get there. I am seriously hoping her type of curve will work with one of the night time braces but we shall see.

Sigh. Really that is all I can say at this point. Sigh.

Birth to 3 visits again

So it has been 1 year since our initial evaluations with Birth to 3. To refresh your memory, Kiya at that time only qualified for speech therapy. At 7 months of age, she showed a 36% delay in her speech. We opted to not pursue therapy at that time and go with a wait and see approach. We always felt that in a year we would have Kiya re-evaluated so here we are.

I had called them with concerns about Kiya not walking independently yet and her speech. Kiya has been replacing the letter m in her words with the letter b. So Mommy is Bobby, Moo is Boo etc. She still says the letter m in words like yummy and vroom so it was just weird.

We had our initial screening this morning. The evaluator asked a bunch of questions and just watched Kiya play and scream. Kiya wasn't in the best of moods this morning.

The questions covered Kiya's speech and communication, fine motor skills, gross motor skills and problem solving skills. The goal by asking the questions was to determine if there were areas in Kiya's development that needed some additional attention.

Based on observation and the answers I gave, the evaluator determined that Kiya is slightly above average in speech and problem solving skills. In fine motor she was well above average and as to be expected her gross motor skills fell short of average. So we fully expected that.

So now what? Well, I will be waiting to hear from an Early Education teacher and a physical therapist to set up a more thorough screening. From there we will determine if Kiya qualifies for services.

Yes, Kiya has been seeing a PT already. However, we were seeing her maybe once a month and we were focusing on her neck muscle issue and her back issue. Sure her walking came up but it doesn't appear to be a concern for our current therapist. My mommy instincts told me to get another opinion. So hence we called Birth to 3.

We shall see what lies ahead. I do feel Kiya is very close to walking on her own. She did take 2-3 steps between Dave and I last night all on her own so we are going to keep working on that. Kiya does tend to roll inward on her ankles and turn her right foot out so between our Birth to 3 screening and our appointment with the Peds Ortho doctor we are hoping to get some answers and some things to work on to improve this.