October 11, 2016 "A lot has happened in two months!"

Having a super-busy, little toddler at home consumes all of my time. Not even to mention I started back to work at the end of August so things have been hectic around here. I haven't had time to update the blog as much as I would like. Rayden has had A LOT going on these past few months. Here are the highlights:

1-Rayden has started cruising along the sofa!!!! It's not pretty, but who cares? He is finally getting from point A to point B upright!! Here are three little, short video clips.

2-We FINALLY got a pair of AFO's that will stay on!! (Three pairs in a months time!) When Rayden was getting fitted for these, Mrs. Cathy noticed how his feet turn in even when he stands up. I showed her the video of him cruising along the sofa and she stated that he needed twister cables.

3-We had an appointment with Dr. Cuomo, Rayden's orthopaedic surgeon, at the end of September. She stated that Rayden's tibias are twisted and may need to be broken and replaced during a surgery. She believes the twist is so significant (especially in his left leg) that it is one of the main culprits of causing his feet to turn inward. She also wanted to do another surgery where she places pins in his ankles because the last surgery of removing a portion of his achilles tendons was not successful. She wanted to recast him and go ahead and schedule these surgeries. I disagreed. I showed her how he has finally started to stand and cruise along the sofa. I believe we need to give him some time to develop on his own and see what happens when he can actually take some steps. Every time he starts advancing he has had major regression due to so many surgeries. I believe that if we give him time to learn to walk and THEN do the surgery then maybe he can bounce back quicker instead of having to start all over again! After seeing the video clip for herself, Dr. Cuomo agreed that he is finally making some really big gains and that we should allow him time to get some development under his belt. She ordered the twister cables in hopes that they will help him take some steps without slapping his feet together and help him get some strength in his quadricep muscles. She also encouraged me not to wait too long to do the release surgery because surgery is easier to do when you don't have such a large correction to make. Either way, she stated that we are probably looking at multiple tendon release surgeries over the next several years. MULTIPLE!! WHAT??!!?? I was so angry to hear that because we were under the impression that when she removed a portion of his achilles tendons that they would not grow back. I feel so mis-lead. Apparently the scar tissue from the last surgery has joined the tendon back together and it is pulling his feet inward again. The thought of Rayden having to go through weeks and weeks of casting and surgeries again is just...just... I don't have a word to describe how I feel about that!!!!!!

4- Rayden also had an appointment with Dr. Sanderson, Nephrologist. She believes Rayden's blood pressure is beginning to stabilize but she wants us to continue monitoring twice a week. She also wants him to continue taking the medication another 6 months. On a side note, I wonder if these docs realize how extremely difficult it is to entertain a toddler that cannot get on the floor in such a small space for soooo long. These two docs made us wait forever that day. We arrived at their offices (in the same building) at 1pm and didn't leave until 6pm!!!! I have to say though, Rayden is a champ. And I certainly couldn't do it without my faithful helpers (Nanny, Pamela, Michael).

5-Since Rayden is having such a hard time with the posterior walker, Mrs. Cathy, PT, stated that he needed and anterior one. Therefore I met with a Pacer representative. We ordered a 'cadillac' of a walker. It has all the 'bells and whistles'. It will take about 30-90 days to arrive but I believe once Rayden gets his twister cables and this new walker he will be able to soar. I cannot hardly wait.

6-A dear friend and fellow SB mother, Kathryn Honeycutt, recommended we go see their orthodist in Wilmington, Mr. Bob. Michael and I decided to take Rayden and I think it was a good decision. He altered Rayden's AFO's so he can stand more flat and ordered the twister cables. He seems so sincere, caring, and dedicated. I feel like we will get better service from this smaller facility than UNC because they are super large and cannot possibly remember all of their patients needs. (Just my personal opinion.)

7- Rayden started gymnastics at Elite Gym in Dunn. Of course there are lots of things that he cannot do like other kids his age, but Mrs. Jenny is modifying the circuits to meet his needs. We believe this will help build the muscles in his legs and arms as well as strengthening his core. I was amazed at how well Rayden listened to Mrs. Jenny on his first visit. He seems to absolutely love gym class and we are so very thankful that Mrs. Jenny is dedicating her time to helping our precious miracle.

8-Rayden was having an extremely horrible time sleeping. We couldn't figure out what was wrong with him. He would only sleep 3 hours and then he was up the entire night UNLESS we were holding him in the recliner in his little incline position. We would hold him until he fell asleep and tried to lay him down but the screaming began! This continued all night for several days until I finally felt like something was wrong. This wasn't just a spoiled baby. He spiked a fever and I took him straight to Dr. Chiodo. She did blood work, strep test and a flu test. Everything was fine. She looked in his left ear and it was fine. She looked in his right ear and OH NO!!! She found puss behind his ear drum and he had a red throat. I hate to say it was actually a relief that she found something. If there was no logical reason for the fever we would have to go to UNC to check for shunt malfunction! She placed him on an antibiotic and within two doses he was back to his normal self, and only waking once a night!! That's more like it. Although I am upset that he has his first ear infection, I am joyful that it is not anything serious.

9- Rayden had a speech evaluation this past week. He blew it out of the water!! Two tests scoring 99 and 102!! He can say over 45 words and even some two word phrases. He can make requests for what he wants (puffs, cup, keys, shoes, etc.), answer yes or no questions, can point to body parts (ears, eyes, nose, etc.) and follow simple commands (Put this in the trash. Get your choo-choo., etc.). The only thing he lost points for was naming specific items in a book (which Mommy worked with him for two days and he CAN do that now!!!). The test administrator stated that Rayden scored the highest she has ever seen at his age!!! I would love to go back in time and SHOW those docs that said he would have "no cognitive ability" the power of my God! This child has such a bright future with an incredible testimony.