Kelly was the first person I spoke to after finding out we now had a new title, "an MPS family". See, Kelly and I share something very special...an understanding of what it looks like to live and parent children with Sanfilippo. Kelly and Jake have a beautiful daughter, Livia 2 1/2, with Sanfilippo, same as Jayden and Brooklyn, and a lovely daughter, Finley 5 mo. who is a carrier but is unaffected. They live minutes from Rockford and we decided to get together for a play date and dinner. Kelly and Jake are gifts to us from God. They too, are leaning on Christ completely. They were the missing link in this whole thing for us. They have the uncanny ability to think the same thing as us. A shared experience. Not to mention they are SO FUN and COOL!
Can I just mention how adorable Livia is?! Jayden already has a crush! They played so well together and as Kelly put it, Liv doesn't know a stranger! She warmed right up to us. We played in the tent and in her kitchen...she made me noodles and Kelly let Jayden and Liv do her hair. Kelly and Jake are wonderful parents and are so amazing! Would you pray for their family too? Thank God for putting them in our lives. Thank God for their beautiful girls. Their new family phrase is LIV life. In tribute to Kelly, I added her new "anthem" to my playlist, "just fine". We get it now just in the few hours being with them and they are doing just that. Liv is hard to be around without smiling. I really think God uniquely blessed our children with the ability to light up a room with a smile. Here is another "God" thing.
They decided to go to Disney. They are going the same days, on the same airline, on the same flight down, in the same hotel!
Thanks God!
Here are some pics of our time with them.
We also had time to spend with my mom and step-dad, Steve. It was great. Jut and Jayden worked in the yard digging holes (so you KNOW Jayden was happy!) and Brooklyn and my mom and I went shopping (so you know I was happy!) We also had family stop by during this time too so that was great! On our way out, I stopped to see my dad. During this diagnosis phase, I found out that the place my dad was living at was closing so he had to abruptly move (he's 73) and stay in a hotel for a number of days while he looked for a place. Luckily, he found a great place and I saw it today. That was a great relief cause I am really the only one he has around to take care of him. Here are some weekend pics...
I think I may have forgotten to update you on our appointment on last Friday at childrens. We met with the genetic counselor and doctor to discuss "what next". Basically, Jayden and Brooklyn will be monitored every 6 months, give or take, to see if they are progressing or regressing and to help us manage the disease. We have a battery of tests for Jayden moving forward to capture a "baseline" of where he is now so we have something to measure against in the future. So, over the next months we will be traveling to a number of Dr. appointments. He will be getting his hearing and vision tested, an ECHO cardiogram, a neuro. psych. eval. and possibly seeing an ENT. They are also starting him on Genistein, a supplement that is supposed to aid in slowing down the production of sugars that his body can't break down. They think it is worth a try. I guess when there is no treatment or cure, you can either do nothing or try something that may not work. Brooklyn is on it too.
Jayden is also going to get evaluated for an update to his IEP that will include physical/occupational therapy. He is currently attending preschool through our school district and goes every morning (on the bus) to an inclusion class. He also gets speech and special ed. We have really been pleased with all the services and the way the teachers love Jayden. It was a rough first month getting everything we needed but now we are all on the same page. Jayden got his first report card and we had our first parent teacher conference. They said Jayden is doing great. He is progressing and getting the classroom routine down great. He loves all the sensory things like a table they fill with sand and water, finger painting and art projects. He also loves playing in the "housekeeping" area. He gets a purse, stroller, baby and walks around the room talking to "my dada" on the phone!
Brooklyn is starting Early intervention with the state this next month to help her hit her developmental milestones. So, I think we are on the right track.
Here are some of our prayer requests:
Jayden tests great on all his testing and it goes smooth
Brooklyn gets great therapists that will help her meet her milestones
Peace in our home and energy
an Eternal perspective
People will see Christ through our situation and draw near to him
Clarity and direction for selling our house and adding to our family
Sleep
Moments to enjoy our children
Direction regarding donations and our financial situation
Fun at Disney and compassion as we meet kids and families further down the road with Sanfilippo
Our new "normal"
Treatment and a Cure/ His will be done
Our new MPS friends Kelly, Jake, Livia, and Finley
Praise for you...and our entire body of Christ
Overall, we are hanging in ther. I got some rest and we are finding more moments when we are not thinking just about MPS. That's good. I think it is hitting me that this is just the beginning orf a long, hard, rewarding, blessed, difficult journey....not the end. Thank you for continuing to follow our journey and supporting us in every way! YOU are AMAZING!!!
We can't do this without you!
Let’s be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12). Let’s be still. (Ps. 37:7). Let’s love life. (Ps. 34:2) Let’s sing of his love. (Ps. 59:16) Let’s give thanks. (Ps. 136:26). Let’s fear the Lord. (Prov. 28:14) Let’s think about good things, noble things. (Phil 4:8) Let’s settle matters quickly. (Matt. 5:25) Let’s set our hearts on things above. (Col 3:2) Let’s show integrity. (Titus 2:7) Let’s be gentle with our words. (Prov 15:1) Let’s be completely humble. (Eph 4:2) Let’s try to be kind. (1 Thess. 5:15) Let’s be compassionate. (Col. 3:12) Let’s encourage eachother today. (Heb. 3:13) Let’s live a life of love today. (Eph 5:2) (-Thanks Jodelle!)
