Goodbye Kindergarten, Hello 1st grade

Having a quiet afternoon one day a couple weeks ago I get a visit from our beloved Child Life Specialist who came in with a question on behalf of her and our music man, "Would it be ok if we acknowledge Gabby's Kindergarten Graduation while she's here since she's missing the last day of school?" I was speechless. Not only had I not connected those things, but they thought about it all on their own. WOW..... I had to take a moment to to absorb the fact that I had a first grader on my hands, then said of course that would be ok, Gabby would LOVE IT! So began some party prep. I made a cap from some glitter (a must) and construction paper, and invitations were made for Gabby to pass out and the time was set for 11am on the last day of school. At party time in comes her Auntie Abbie, medical team, music man, PAC team, nurses, Child Life and Music man Dave. They made a beautiful music montage cd, presented Gabby with a diploma and held a banner up in her honor. Then came the confetti and cheers! Gabby so knew this day was for her and about her and everyone was there to celebrate her. Each person there had a moment to connect with her and making a memory for her to cherish. I cried at the true sentiment that was shared. 

 

Walk this way.

I can't say that I appreciate epilepsy, or that I can see any real good in the label, but what I can appreciate is the paths in life it takes you down. We again created a team for the NW Epilepsy walk around Greenlake, and again Gabby was unable to attend. This year though, we had a wonderful support and the team marched on in honor of our precious Gabby. Gabby's Purple Warriors consisted of her dad Greg, his fiance Beth, her Grandma Terry and her friend Larry, her Uncle Nick and cousins Carmen and Alex.They donned their purple shirts, special buttons, and walking shoes to raise money and awareness for families like ours. 

"Looks like the donation total of the team right now is about $2100 and the total donation’s are just over 80K! Amazing. The walk was great, it was a sea of purple and they handed out balloons as we started which was really cute. There were even dogs wearing purple t-shirts. :) We just did once around the lake, it was super windy but the rain stayed away." -Beth

Not only was family out in force for Gabby, some very special friends supported us as well. Sally and her friend Jill did a team "Hear and Sole" in which Gabby's name is on their team shirts. And a long time friend of Greg and family, Kristi, walked as "Gabby's guys and gals". We are also touched to thank the Sounder FC for their donation, what an amazing feeling to see all the support. There are no amount of thank yous that can express our gratitude for everyone's love for Gabby and support for a CURE. With every step around the lake, we are one step closer to health!

 

Real Smiles

Got up with Gabby a little early today and the sunshine was out and a smile on my face. Got Gabby all tucked back in and she fell fast asleep and I couldn't bring myself to miss out on the gorgeous morning staring at me through the window. I put on my walking shoes and grabbed my music and took a little recharge time outside. Felt good to clear my head for a while and feel my blood pumping. About halfway back I got to thinking of Gabby and this hospital stay, the ups and downs. The image of her smiley little face popped in my head and I almost started to cry as I had a really difficult time remembering the last true smile on her face. It warmed my heart to know my little girl is there and with all the changes we are making I could be taking home a healthier, more comfortable, happy girl!

This past week Nana and Pops were here for a visit and got to see the smiles first hand :) Even snuck in a little snuggle time! 

Transition still going slowly, but still going. Feeds advancing slowly too, and I am living by the ideal that slow and steady wins the race!

 

Over the hump...I hope!

Today, what a day! Sunshine, fresh air, Gabby looked so good. What a difference it is to relax a little and see the sparkle in her eye return. I was so drained watching her suffer, I can't imagine how depleted she must feel. Seems increasing her gabapentin and methadone, we have found a sweet spot! She does indeed have another UTI though, but we caught it early and got her on IV antibiotics to kick it to the curb quickly. Still not much of an idea of when we will go home, though not sure how that will be. We have such a routine now here, this almost feels normal. How odd a thought! Sure we will fall right back in to home life, but seems still like a bit to far away to grasp yet. 

Feeling better today!

our fun room

we soaking up some sun!

Also thought some may want to see what our rooms looks like here. They do a decent job making us as comfortable as possible and we have decorated it up to make us feel at home. :) Makes us happy to have all the decorations around. Thank you to all who have added to the loveliness! 

Patience

Best put today in morning rounds by our Attending, "Gabby's middle name should be patience, since that is what she's teaching all of us". The transition from dilaudid to methadone hasn't gone as smooth or fast as we had wanted.Today we decided to change to IV formula of the methadone wondering if she just wasn't absorbing the liquid well, and they can dose it very specifically with a greater handle on how the body uses this form. Then, we will try again to wean the dilaudid. After we discussed the information on Gabby from today, the doctor looked at me and again mentioned just having to be patient. I agreed, and stated that it's been a very tough life lesson for me to learn. She smiled at me and complimented me on how much less nervous and stressed I seem compared to our last long visit here. Said she sees a much stronger me, and that made me feel good. Having someone who has only seen me at my toughest times notice growth and strength meant a lot. 

Life has funny ways to teach you what you need to learn....it's finding a way to see the lessons that tends to be the toughest. 

And, if we ever need proof that there's a little stinker inside of that adorable little person, I got photo proof today! Was looking all over for the syringe that we put on the suction tube to keep it quiet, and look where I find it!

 

Off we go!

ECK was totally cleared, first dose of Methadone given! OMG, off we go down this road of crazy uncertainty. Am feeling confident though, as Pain team doc has already been by once to check on Gabby, and plans on coming often to watch for any little sign of  discomfort, withdrawl or reaction.... nervous and excited!

Boas, Braids, and Meds...Oh My!

The last few days have been full of learning and fun. First, the learning. We have been approached by the pain team about switching Gabby's long term continuous drip pain med Dilaudid (hydromorphone) to Methadone! I know!! I had the same reaction of utter shock and awe. Not knowing this medication had a role in medicine outside of 'clinics' for heroine addiction, I asked for A LOT of information and had a very long discussion face to face with the pain team. I learned it has a long constant level in the blood, and so it really reduces the ups and downs of pain control, and will reduce any withdrawl effects we could see in weaning dilaudid since Gabby has been on it continuously since March 26th.  After my medical concerns were answered, the MCC team (our team of doctors) introduced me to a lovely family who has a child using methadone for pain treatment, and seeing the innocent face of a BEAUTIFUL child really helped me put an ease to my on edge nerves. We still have some steps to go through before the switch, one being the ECG of her heart rhythm. Waiting for cardiology to come back with their thoughts, as Gabby did have what is noted as a 'prolonged Qt' pattern. Her earlier ECG's didn't show any issues, but things change as we all know and am so pleased the staff is on top of checking everything out! It could be within a normal range, so not concerned unless they give me reason too! :)  More updates on that as I hear.....

Next for the fun!! We have been getting up in the chair on a daily basis giving Gabby some sensory choices, story and song time, and just independent play time. Our friend Brenda gave Gabby the boa for her birthday, which we had so much fun getting dressed up in! Her bear has been great, as she and I have explored it with Gabby giving meds and feeds to her. I feel this is giving Gabby even some more information on what goes on in her own body. Regan even took some time seeing what it was all about. And today I did a Family Centered Care "New Anesthesia Resident" orientation so Tricia, Joanne (not pictured)  and Margaret entertained Gabby with music and HAIR DO DAY! What adorable braids they did!!