Monthly Archives: January 2015

Rehab week one

Monday morning we arrived at Seattle Children’s at 9am and not a second of the day was waisted!! Therapies started at 9:30 and did not end until 11:30! First with 30 minutes of PT, followed directly by 30 minutes of Speech and was finished off with an hour of OT! Colbey Raye was excited to have so much attention but was very tired already (she typically naps from 10am until noon). Finally able to rest Colbey Raye took a short nap, ate a quick lunch and was back at it for another hour of therapy! 30 minutes of PT followed by 30 minutes of speech, busy busy girl that very first day, but Colbey Raye has adjusted pretty well. Now she is on a schedule that better fits her home schedule. A typical day here consists of breakfast and meds, an hour and a half of therapy in the morning (sometime between 8:30 and 10:30) followed by a 2 hour nap and a quick lunch, another one and a half hours of therapy (between 1-3) followed by another nap! It a very busy day for Colbey Raye and by the end of it she’s very tired! She has adjusted well and is definitely back to stealing every single heart she comes in contact with! Blowing kisses to everyone and charming all with her adorable smiles!
Monday was a day of introductions, a little bit of getting to know Colbey Raye and her comfort levels. A day to find out what helps Colbey Raye tick and what could be used to best motivate and excite Colbey Raye all while getting her to work on and perfect her skills. She was tired from the moment we arrived but she still managed to work hard and show that she has amazing potential to improve here!

We were able to get Colbey Raye onto a better schedule that works well around her nap, so Tuesday was a bit better for her on the sleepy side of things. Although being in a “new” place again made for an early 6am wake up call, Colbey Raye still managed to keep up her stamina and participated very well in all her therapies Tuesday! We got a lot of good steps out of her, a lot of good weight bearing on her right side (elbow support) and she even drank a ton of juice through a straw! Bravo miss Raye, she did great! Napping was very difficult for her though and she only napped maybe an hour. On to the afternoon sessions, again Colbey Raye did very well, with one minor set back. This is a struggle for me to mention as I still do not know what my gut thinks about it all and I have still not been able to speak to our neurologist yet (he should be by soon) so I do not have to many answers. But on Tuesday during Speech Colbey Raye had an “episode” (I am calling them episodes until I know for sure they are, it’s hard to even type the word, seizures). Colbey Raye has been having these staring episodes for a while now, she will sort of blank out, stare of into space so to speak. I have always been able to “snap her out of them” with a loud clap or by saying her name loudly, but never by waving in her face. Her PT back home has witnessed one, but again we clapped and Colbey Raye came to and smiled, going back to her normal playing. But Tuesday it was different. Colbey Raye began to stare blankly ahead, Beth (her ST) said her name, I clapped, Beth touched her knee, nothing. Colbey Raye didn’t snap out like usual and continued to stare for a few more seconds. Beth was worried, I was concerned but still didn’t want to deem it a…… Seizure. Well, Beth told our nurse, the nurse told our rehab doctor, the doctor called neurology and now Colbey Raye is back on her full dose of Zonisamide waiting further instructions from doctor Owens. Long sigh…. And still waiting for more information and answers. Tuesday night was also a doozy, with the new med change there was a mix up in medication dosage and we ended up not getting Colbey Rayes meds until 9:45. The poor girl was exhausted!! So exhausted that she couldn’t even fall asleep and was up crying, tossing and turning until 10:45 😥. Finally asleep, I snuggled up, fell asleep and before I knew it I was awoken. Colbey Raye was up throwing up! She threw up 3 times between 1am and 2:30am. We were up until 3:30am waiting for some anti nausea medicine and back to bed we went.

Wednesday morning Colbey Raye woke up, acting her usual happy self and seemed just fine. A little tired still, but morning therapy went well, Colbey Raye had a very productive and good day! We decided to cut out the juice (she doesn’t drink it at home and we think that along with being over tired caused the vomiting) and Wednesday went well! Napped great, participated in therapy great! But again had another “episode” during ST and would not come out of it with claps or pinches.

Oh Thursday was very rough. Colbey Raye was over being here! She did not want to be in our room, she did not want to go to therapies, she didn’t even want to scoot around on her bottom 😔. She was tired, emotional and wanted noting to do with anything! She had another “episode” this time I was the only one with her, and I again could not get her out of it and she came out on her own, followed by crying 😢. All she wanted was a ba-ba, her stroller or her bed! We ended the day a little early, she took a good long nap! It still did not cut it. I went to me weekly meeting with all the doctors and therapist, while the nurses fought over who got to stay in our room with Colbey Raye and Beau 😋! We set a few more goals for Colbey Raye, and discussed discharge dates. We have been fighting insurance on this admittance, and we were told only a week of rehab would be permitted, but the doctors here have chosen to over ride insurance (not sure what is going to happen there) and they have given us a tentative discharge date. We will be staying until the 12th of February, possibly longer! All depending on if Colbey Raye continues to make such good progress. I’m being told not to think about the insurance side and that the staff here will take care of it. So, two more weeks at least for miss Raye here at Childrens. The afternoon of therapy was just as hard as the morning. Colbey Raye took another nap, and then sister came for a visit! Gama, uncles, aunt and Austyn Jayne came to visit and play! We had a great time visiting the playroom and although still tired Colbey Raye had fun 😊. The visit was over, sister and family left, daddy came and Colbey Raye took another nap! Followed by a little play time then off to bed, and she slept amazingly!



We started our morning off on the late side, Beauden and Colbey Raye slept in! It was great, and Colbey Raye participated wonderfully in therapy again! It was good to see her in such happier spirits after such a rough day yesterday. She must have needed a little break, and the lighter day yesterday and good sleep helped get her ready for another busy productive day today! So far today has gone good and both babies are napping now! Daddy brought Beau up his swing last night and this is the first time he has napped longer that 20 minutes! Thank goodness for that too 😋. I’m hopeful that the rest of the day will go just as well as the morning and excited to see what progress Colbey Raye can make today.

All in all I am feeling so hopeful for Colbey Raye! All her therapists here feel she is doing good, making good progress and all agree repetition is key for Colbey Raye! We touch her righty over and over, she’s begun to touch it more herself! We make her lean forward and make forward motions from her trunk and she’s started to do so on her own! Even going to her belly all by herself! We are working hard to have her put two worlds together, and she is trying so hard! We have gotten her to speak one word and sign another, so we are on the right track! We have the best group of nurses, and we are starting to feel at home here again. Settling in nicely and Colbey Raye and Beau have begun to room well together! It’s been a tough transition for both, Beauden has been very needy, wanting to eat constantly, has to be rocked to sleep and won’t let me put him down for more the 10 minutes at a time. But at least he is happy, smiley and content when being held! Full of hope! Full of joy! And feeling at peace with this stay. what a difference it is being at the hospital with a healthy, happy, mobile, girl verses the alternative. Thank you God for this amazing opportunity! And thank you all for the prayers and support! Although this is a happy stay, a helpful stay and a good stay it is still hard on our family and we do not like to be split apart. Prayers for a productive stay, and a positive rehabilitation!



Inpatient rehab for Colbey Raye


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.



The Struggle is Real

I have to admit, I am struggling. I have this fight going on inside me and I just don’t know how to change the inner wrecking ball that can bring me to tears at the drop of a simple word, phrase or sight of a picture, whatever it may be. My toddler, still a baby in my eyes and she probably always will be to me! Because she’s just my sweet little baby Raye! But I see more and more that others view her as a baby as well, because she is, but she is also not. Her peers viewing her as such a little baby stands out to me the most. We, my three little ones and I, spend most of our time home together and at therapy and doctors appointments so our daily routines and activities are normal to us! Colbey Rayes butt scooting, baby babbles and gestures are the normal for us! She is learning new words, understanding us more and trying to get into the mix as best she can. I can see the gradual change, I notice all the new little improvements, but as time goes on, others continue to pass her by. Seeing her with others around her age, seeing other toddlers do what Colbey Raye is not able to do as a result of her seizures and surgery is a reality we live in but it is hard at times. As others, especially those younger than Colbey, pass her by I cannot help but feel frustrated inside for her. As they start to walk, talk, playing together, my heart breaks a little because she’s not doing it with them. It’s hard for me to see how mature and able these little ones are, Colbey Raye should be right there with them! Running, fighting over toys, sitting on the couch watching a movie with her sister, but instead she try’s so hard to scoot on her butt to find where the action is, toys get taken from her and although she lets out a little grunt she can’t retrieve it, she will fall right off the couch and not learn from the consequence. Colbey Raye has come so far!! She has conquered so much and is such a strong hard fighter. She amazes me everyday with her determination and her ability to master new creative ways of doing things that come so easy to others. She is so tough, so smart and so trusting, I hope this never changes in her. I still cannot help but hurt, as her mother I want the world for her, I want to give her two working arms, walking legs, eyes that see, a brain that is free! But I can’t. The struggle is real, we live it everyday. Ours be different than others, mine even different from Colbey Raye’s, but it is real. This year I did not make any New Years resolutions, just a prayer. A prayer for my strength to continue, for my trust to strengthen and the ability to truly accepts, willingly and gratefully what is being asked of me. And for Colbey Raye to keep this amazing attitude of determination, to always be the lover of life that she is, to always keep that sweet happy smile on her face and know that no mater the height of the mountain she is strong enough to over come whatever challenges are thrown her way.
A verse for 2015, Mathew 17:20, we will have faith and He will help us move these mountains! We are ready for what 2015 will bring our way.
“Be your name Buxbaum or Brixby or Bray or Mordecai Ally Van Allen Colbey Raye. You’re off to great places. Today is your day! Your mountain is waiting so get on your way!”

Here we go.