Monthly Archives: February 2015

She will always be my baby

There is just something about this boy, I can’t get enough of him! Can I please just freeze him in the little chunky body, put him in a bubble, snuggle, kiss, and hold him close from this day forward! He’s already grown and changed so much, I blink and he’s outgrown his clothes! I turn around and he’s talking up a storm, licking his lips when we eat, smiling when his sisters talk to him! I love his smart little self so so much, why do babies grow up SO fast?

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I had to share just how much I adore my little boy now, because I honestly did not feel ready for him. I was not scared or worried about having my third, I was just not ready, I never felt ready. I was not ready because I felt like I STILL had a baby and I was not attached to the thought of having another baby when the baby I already had was still in fact so much a baby! I’ve heard so many people say “I just wish I could freeze time and keep him/her a baby forever!” I’ve even said it! First I said it with Austyn Jayne, I loved her little self and I didn’t want her to keep growing so fast, and again I say it almost daily with Beauden. I don’t want him to grow this fast! But that’s what babies do right? They grow, change, mature, and soon they are walking, talking, crazy 1 year olds, 2 year olds, 3 year olds etc… But what happens when your baby stays a baby longer than the typical? Colbey Raye will be 2 in just two short months! And she’s still my baby. Yes, yes Beaude is my baby! My sweet baby boy, but tomorrow he won’t be, I will blink and before we know it he will be talking, walking and running around like a crazy rough and tough big boy! But Colbey Raye, she’s that special one of a kind little baby that we are always talking about, the one that stays little longer. We say “I just want him to stay little” but when one is faced with that reality what does that feel like? Let me explain form my experience.
Austyn Jayne was born, she grew and turned into a little girl before I could even take a breath! I loved each moment, but gosh where did it go? Josh and I both missed that “baby” phase of life and so along came Colbey Raye! Another girl, I was so excited and had already dreamed up what life would look like 2-3 years down the road. But all that changed when Colbey Raye was diagnosed. The seizures put a damper on my plans and I had no idea what life would look like in a 2-3 years down the road. Instead of sitting there wishing to freeze Colbey Raye in the ball of baby love I watched eagerly to see what she could do, what she would do next! I held onto each milestone for dear life praying she’d master another one! I had my baby, and she stayed a baby for so long. She didn’t turn one and run off into the crazy world of toddler hood leaving me to dream of the days where I rocked my snugly sleepy baby all day. I still had my baby!! She was still a baby that smiled at the sound of my voice, that clung to me for safety and snuggled when she was tired. She still cooed and didn’t talk, and was barely crawling when she turned one. She was my baby and I never ever felt that sad longing feeling to hold a baby because I got to keep mine a baby for so long! I never wished for time to freeze with Colbey Raye, I savored each moment of her infancy and was able to hold onto my baby. I didn’t wish it to slow down, to pause and I didn’t wish it away! In a way I feel so blessed by that experience. I will never have the same type of motherly bond that I have had with Colbey Raye. Most babies grow so fast that the bonding time just doesn’t feel long enough and they are all of the sudden arguing with you over what they should have for lunch! How did they grow up so fast?!

Colbey Raye is the baby we all “wish” for, but in reality we are all so thankful when our infants become toddlers and our toddlers become kindergarteners. Not everyone is lucky enough to keep their babies little longer! I was, I got to keep my baby little, innocent and sweet. I have a confession, I was not ready to let her go! I didn’t want to let her get big, I wanted my Colbey Raye baby to be my baby and I did not want her to share her baby title with another! I almost felt gypped when I found out I was expecting Beau. I wasn’t ready!! My baby was still a baby and she deserved to stay that way, so I felt. I never longed for another baby after Colbey Raye, I never felt like my baby was grown and I needed a baby fix, I never felt ready, and I didn’t want to bump my baby out of her well deserved baby slot in my heart. I saw other women with infants and I never thought “how sweet” instead my stomach sunk at the thought of having another one. All in all, I did not feel ready. It was not until about 24-48 hours after Beauden was born that I fell in love! But I did fall INLOVE and I fell hard when it hit! Now this boy has me wrapped around his little finger and I just adore him! He’s growing to fast and I want to keep him small forever! But in reality, I love that he is smart, that he is growing, learning and changing right before my eyes! And even though he’s the “baby” of the family, Colbey Raye never lost her title as baby, and she was not replaced by her brother. Colbey Raye will always be my baby, no matter how big, or how old, she’s something special and my baby she will be.

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Blessed by this Rehabilitation stay

This stay has been so different from all the rest. It has been much easier in so many ways, harder in others, but just as purely exhausting as ever!! For both myself and Colbey Raye. Her days here consist mostly of therapy, sleeping and eating! But we get to take long walks in the evening, something she’s never been able to do while in the hospital, and she gets to spend time hanging out with all the wonderful nurses in the unit. It’s different having another baby here with us. Having Beaude here definitely helps pass the time along and between the two of them kept busy! It’s different not having to keep an eye on Colbey Raye every second of every day waiting for the seizures to strike. Instead I feel comfortable leaving her for a few minutes so I can leisurely go get a coffee without running to and from the elevator in fear of missing a seizure or a doctor. I can relax more and rest easy at night (if Beauden allows it) and I feel hopeful watching Colbey Raye’s progress instead of hopeless through each second of each seizure. It’s easier all around! But a it is a little harder accommodating 2 babies this time around. It’s harder now that Colbey Raye is so mobile and does not want anything to do with being stuck in our room! Unless she is napping, then she’s okay with it 😋. It is harder keeping Colbey Raye entertained in the afternoons, but I would take this visit a million times over any other we have ever experienced. It is just as exhausting though… I remember going nights, days without sleep in order to keep an eye on Colbey Raye and her seizures. It was mentally exhausting during those visits and so hard, but this visit is more physically exhausting! Between trying to lug two kids around all over the place (thankfully our therapists are abundantly helpful) and the opposite nap schedules these two have set I’m exhausted. Helping Colbey Raye walk, kneel, stand, roll etc… Is tiring. Bouncing Beau so he won’t scream during therapy sessions in the gym is tiring. Dealing with puking/pooping kids in the middle of the night and getting up every hour with Beau so he won’t wake Colbey Raye is exhausting. I think I went over 72 hours with only sleeping about 5-6 hours that whole time! But I still would take this stay a thousand times over any of the others!
A lot has happened since we arrived 17 days ago. My grandmother passed away the day after Colbey Raye was admitted 😔. It was a sad time, but we are all happy she ha been able to move onto the next life, one of comfort and freedom from the pain and suffering she went through in her last days. I was able to make it to the funeral Saturday thankfully, and also was able to watch my brothers amazing ice skating performance the next day! I absolutely love watching him and his partner skate, and am so thankful that Josh was able to spend the weekend with Miss Raye so I could attend both the funeral and the ice show. Josh had his first experience ever staying in the hospital alone with Colbey Raye. He has stayed with us many many times, but never without me. It was a good experience for him but he was ready to leave by Sunday night!
As for Colbey Raye and her progress, well let me just say WOW! She is doing so so great!! She has successfully pulled herself up to the standing position 3 or 4 times now. Working very hard still on her balance and accuracy, getting her feet underneath her where they should be and the mechanics of doing it all correctly, but it’s a huge step in the right direction. If Colbey Raye is motivated enough she will take 4-5 steps with each leg, while holding onto just my hands. I hold her right and left hand and give her a good strong support, and she will step towards me! Before her stay here she wouldn’t even stand without my support on her chest/under arms, and now she’s taking steps with even less support than that! She using a gait trainer to help her establish the walking pattern. She sits in it mostly and uses it as a seat while she walks her legs forward but it still helps in training her brain to establish those walking movements she needs! She has begun to be more comfortable on her belly and has been putting good weight through her right shoulder by resting on her right forearm for support. And her language, her understanding, has improved as well! I can now ask her questions such as “Colbey Raye did you poop?” And she will respond correctly yes or no (with a head nod or head shake). She asks for things using more words and now she initiates these words on her own instead of us having to ask her. For example:
Colbey Raye: “go?!” (pointing to the door)
Me: “do you want to go for a walk?”
Colbey Raye: “mhmm” (nodding yes), “please” (saying it verbally as well and signing it).
I’m so proud of all the things she has accomplished, is learning and she is trying so hard to over come so many obstacles.
Gosh this girl has a way with people, and not only are her nurses, doctors and therapists in love with her, but so are the other parents and kids in the unit!! Her smile, kiss blowing and waves make everyone smile and as Jacob (a 12 year old boy also staying in the rehab unit) put it, “she just brightens up this floor!” And she does! But… She’s also a little sassy, loud and a tease. But none of that casts a shadow on her sweet happy personality and the grumpy attitude she can have is quickly forgotten as soon as she blows those signature kisses of hers! I love her so much, and I love how much she can brighten up a place that could otherwise be a little bit sorrowful.
We’ve been here a while now, and although we are excited for our return home I wish we had more time here to help Colbey Raye on this journey! She’s come so far and made huge steps during her stay in rehab and I’m so proud of her! Myself as well as all the doctors and therapists here agree she would benefit so much with more time here, but we cannot stay forever! The hospital has been so very generous and granted us 4 whole days of “extra” rehab as our insurance has still not responded to the request for more time. So tomorrow will be Colbey Raye’s last day in rehab and we will leave knowing how truly blessed we are by this hospital, family and friends who have helped out, and by prayer! God has a plan, and I have seen him work in mysterious ways the past few months by closing doors I didn’t want closed and then opening doors I never dreamed would open. This past year and a half has been the hardest time in my life, but it has brought forth some of the greatest experiences, and the most amazing blessings! We place our hearts in your hands Lord, we have been abundantly blessed by your love.

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First half of week 2 in rehab!

We are on day three of week three at Childrens for inpatient rehab. Last week was a good learning week for Colbey Raye, for me and for all the therapists working with Colbey. There were ups and downs but over all a very rewarding week, and Colbey Raye has learned a lot. From vomiting and diarrhea to taking steps and combining words it has been an eventful week to say the least. We were so happy to be granted an overnight pass and we went home to watch the Super Bowl with family and friends, Colbey Raye was happy to be back with dada, sister and to sleep in her bed! She played and enjoyed the short visit! After the sad Seahawks loss we loaded back up and Colbey Raye, Beauden and myself headed back to the hospital. Only 20 minutes on the road Colbey Raye began to vomit All… Over… Everything… Pulled over, cleaned up as best I could and back on the road just in time to hit traffic! We finally made it back to Childrens, just 40 minutes late is all 😋. The babies went right to sleep, I cleaned out the vomit covered van and finally made it into bed myself! A bit of a crazy night but we were so happy to have been able to spend some time at home I wouldn’t change it!

Monday:
Monday started off with a bang again, therapy right away and it took Colbey Raye a little bit to get back into the busy morning but she managed well and by the afternoon sessions she was ready and happy (for the most part) to be back at the hard work! She took about 5 steps with her right foot without prompting! She needs our support to keep her up and balanced but we did not have to help her lift up her right foot! It was amazing and I even caught a step on video! I cannot figure out how to post the video here but you can find in on my Instagram @napswithphoebe. Along with her wonderful stepping progress she is also trying hard to expand her language skills. It is all a work in progress but she’s coming along!

Due to the few vomiting incidents, starring episodes, sleepiness and the growing fist to head gestures Colbey Raye had a haste MRI Monday night and the results came back normal! Thank you Lord for that! There is no signs of excess fluid building up so we can rule out Hydrocephalus as the cause. I also met with Colbey Raye’s neurologist Monday afternoon to discuss these episodes she has been having. He does not think they are seizures! But we cannot know for sure without further tests being done. So the plan for now is to keep track of the episodes while we are here in rehab as well as once we return home. If they continue to happen daily after our return home then a prolonged EEG will be ordered. I’m hopeful these are not seizures, and we haven’t seen any since Monday, but my concern is they began to fade away once her Zonisamide levels went back up. We will keep an eye there. Daddy came to stay again, and Colbey Raye was so happy to see him. She is a daddies girl and has been asking for him ever since 😊.

Tuesday:
Therapy went pretty well in the morning, Colbey Raye was interactive and very busy for most of it. After the half hour of PT, followed by a half hour of OT Colbey Raye (She worked very hard in each session) she was less than thrilled to participate in speech. Hiding under the table has been her idea of escaping from tasks and toy hoping in hopes to distract us from the task at hand is another tactic she likes to try to use. Luckily for us we see right through her! And continue to push her even when she tries to outwit us. Her attention span is about a minute tops, and we are trying to lengthen that by making her finish tasks before moving on. It’s difficult to do! We ended speech a little early though, she was all about the snuggles and I think she has figured out that she has got these therapists wrapped around her little finger!! A long nap, a quick lunch and then a chat with the doctor. The doctor was trying to explain that due to our uncooperative insurance they are struggling to keep Colbey Raye here longer. I was told she’s been approved to stay until the 8th, and that depending upon the feedback from her therapists we may not be granted more time. I was sad to hear this as I felt like Colbey would benefit so much from a longer stay. Next back to therapy she went and again worked hard! Due to a fussy brother I left the gym and missed the last session, but again Colbey Raye was tired for her last half hour and PT was cut about 10 minutes short. It happens, and Colbey Raye has been so strong, tough and cooperative for a 21month old that a little slack can be a little reward for the work she has put in. So Shannon (PT) and I discussed Colbey Raye’s progress. Shannon feels like Colbey Raye has made HUGE improvements and would benefit from a longer stay. She plays a huge part in advocating for a longer stay for Colbey Raye, and assured me she is going to try hard to keep Colbey at least another week if not longer. In Shannon’s words “I’d like her to stay until she is walking, and I don’t want her to leave until she is more consistent in her new abilities.” Colbey Raye has made great strides, but my fear and Shannon’s as well, is that if Colbey Raye leaves rehab to soon she will slowly fall back and not keep these skills she’s progressed in. The fight for time continues!

Wednesday:
An almost sleepless night for Mr. Beauden and myself has left us all a little exhausted today! But that didn’t keep Colbey Raye from showing off! She did so great this morning, was happy and cheerful with a lot of hard work and a good effort to stand on her own. She even stood at the table by herself for a little but and came back down to sit slowly. She explored using a walker a little, just touched and looked at it but was very interested. She did a good job staying on her belly (something she hates to do) and practice weight bearing with her right arm. And for speech Colbey Raye got to spend time with music, one of her most favorite things!! She loved the guitar and the music teacher kept her attention longer than anything else ever has! It was so fun to watch her dance, shake, play and sing. We all laughed a lot too 😊. This afternoon went well too and she even used the walker to pull herself to her knees a few time! I missed that too, a fussy bumpy is no fun! But I’ll take Shannon’s word that Colbey did it! It’s only a matter of time before she’s confident enough to try and pull to stand. She did take a few steps with the walker too, but Shannon and myself both had to assist her while she threw a tantrum and tried to sit with every step! A work in progress 😋. Still after the fits her therapist said “Colbey you are the best part of my work day.” She’s a sweet girl, yes she is! We are still waiting to hear from insurance, and are praying for a longer stay! She is so close to reaching a few goals, and I know she deserves more time to achieve them! All the therapists are rallying together to extend the stay as well as the doctors. We have such an amazing group of doctors, therapists and nurses here backing up Colbey Raye! And they all love this sweet girl already.

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