Oh the smile! Oh the joy and the love in that little face. I just have to take a moment to smile myself she is so adorable.
The last two and a half months have been a bit of a whirl wind. With the arrival of our sweet little boy, the holiday hustle and bustle and other events that have taken place things have been a little crazy and busy around here to say the least! So much has happened I can hardly believe it’s only been 2.5 months! I have not had much time to report on Colbey Raye’s progress, her achievements, her bumps, set back and goals. For a split second things looked to be heading in a more mellow direction! But we started 2015 off with a bang and busied things right back up again! How to explain it all? I know I haven’t posted in a while on progress and changes, so I may repeat a few things from previous posts, but here we go!
To start off Colbey Raye is now on her 3rd step of a 9 step wean from one of her medications. So far this process has gone well and there have been no complications! We are excited (slightly nervous) to see how well she will continue to respond to weaning the medications. It’s a very long drawn out process but we have to start someplace, and we are happy to report so far so good!
Colbey Raye has been making good progress in her vocabulary and speech abilities! Her word count is up and she continues to try saying more and more every day. The concentration she puts into trying to speak a new word is amazing. We visited cousins on Friday and Colbey Raye said “Cole” with ease! And she says it rather cute I might add 😊. And as I asked her to say Coopers name she became very focused, her brain was working so hard to put the sounds she was hearing into a word that she could speak. I could just see the wheels turning and she stared Cooper down and tried hard to figure it all out. As I said Cooper over and over she just sat there, concentrating and then, “Boober” she finally said it! Proud of herself she gave herself a good clap on the chest and a smile! Now we tried for Charlee too but I think Cooper took it all out of her!! 😋. Along with trying new words she has also began to add words to her every day vocabulary. She says “Buber (brother),” “Dede (Whitney),” Jack-Jack, no-no, thank you, please, cheese, juice, baba, nigh-nigh, Chandler, diaper, foot, shoe, sock, hat, and I am probably forgetting a few! She still refuses to call me mama, I’m just her other “dada” for now 😋. She has also began to nod her head yes, and shake her head no! It’s so cute I just want to kiss her every time! When she gestures at something I can ask her a question like “do you want more?”and she will nod yes and say “mhmm.” It makes helping her a little bit easier. Another sound she has begun to make is related to music. Colbey Raye has always loved music!! She loves to dance, and now she has added singing and humming into her routine! It is probably the most adorable thing to witness, Colbey Raye sings “let it go” and the best version of it I’ve ever heard 😂. I do not sing, but I will belt out “Let it go” just to get Colbey Raye to sing along with me! Along with her speech Colbey Raye’s comprehension has grown. We have come to realize Colbey Raye responds better to verbal cues rather than gestures and visual cues. If I explain (in very simple terms, the fewer words the better) what we are going to do she usually responds in a much better manner. For example, Colbey HATES her diaper changed, she will scream at the top of her lungs, arch her back and kick. I’ve started to tell her she needs a diaper and explain that we are going to change her pants. This has helped her be more calm for the event, yes every diaper change is an event around here! She will still yell and cry most times but the forewarning has helped. We are so happy with this jump in her language skills, she is so smart and so eager to learn more. Very proud of our little miss Rayzee!
I love being able to report about the good, the happy and the exciting progress she is making! But there is also the hard, and challenging side Colbey Raye faces daily. Which brings us to a decision I chose to make in order to better help Colbey Raye on her long journey. As most could tell by my most recent post I’ve been having a rough time all around and I finally realized why! Sometimes we have to hit a low point for God to work His way in, He lights the way to doors we would never open otherwise. Colbey Raye has her weekly therapies, we patch her eye at home and work on eating with a fork/spoon, drinking thin liquids, we practice balance and vision skills to help her cope with vision loss, we massage arms and legs, practice fine motor skills, help her with leg and arm strength etc… And she has progressed a lot since surgery! But not recently. We have big concerns pertaining to her vision, she has tracking problems even on her “good” side, as well as staring spells and a drifting/lazy eye. Her arm is still unused, she rarely notices its presence. She recently in the last week or two has begun to touch the fingers on her right hand and uses her lefty to take her righty away from you if you touch it. But for a helper hand she has made little to no progress. As far as her right leg goes it is still purple as can be and freezing. Her Neuro surgeon is concerned and mentioned it to our pediatrician. So far we have not found an answer or a way to help keep it warm other than socks on socks with thick warm boots or slippers. Still it is cold and purple more than not. It’s painful for her when we touch and massage her foot when it is extra cold, but she is patient and tolerant! Her strength in her right leg has improved and so has her center of gravity. She is standing better and has been lasting longer in a standing position (always with our support). Although these steps are in the right direction there are many concerns that have been brought to my attention by her therapists and so I decided to seek out more resources. After a phone call to the rehab center at Childrens and a quick chat with doctor Epkon Colbey was seen just a few days later for an evaluation. After a few minutes of observing and discussing Colbey Raye’s cans and cants the rehab team agreed it was in our best interest to readmit Colbey Raye for intense inpatient rehabilitation. So, tomorrow we will be heading back to children’s for a week long stay so that Colbey Raye can undergo a very intense rehabilitation program. If she progresses well and we see improvements her stay could be lengthened another week or so. We are very eager to help Colbey Raye! But these types of stays take their toll on all of us. Colbey Raye, Beau and I will be staying at the hospital while Josh and Austyn Jayne stay home so Josh can continue to work. Austyn Jayne at first was not to thrilled about the idea, she begged to go with us to Seattle but after a little talk she thinks it will be fun to spend time with her aunts and uncles along with some quality daddy time 😊. We are ready for another adventure and I am thankful to be feeling more positive and honestly relieved! I was feeling inadequate, I did not feel I was able to help Colbey Raye as much as I had been prior to our newest addition. I now know I just needed a push in this direction of thinking so Colbey Raye could get the extra nudge she needs to continue making remarkable progress! We are so thankful for all the thoughts, prayers and support we continually are shown by all, thank you! We could use extra prayers this week, it will be exhausting for Colbey Raye, and all of us, but well worth it! She smiles through it all, we are so blessed by her every day.