On Thursday, we saw Dr. Kaji, Noah's urologist. She told us that Noah's kidneys look even better than when he was first born. Noah has strictures in his urethra, so rather than having a straight tube, it looks like several sausage links. Dr. Kaji assures us this can be corrected surgically and we anticipate that to happen some time in November.
Today, Noah and I headed back to Children's Hospital for a trachioscopy. Noah was not very excited to be back at the hospital.
Dr. Dunham used a scope to look at Noah's trachea. Unfortunately, it has gotten significantly worse than when he was born. Noah's trachea has completely fused shut. Dr. Dunham looked at it from the top through his mouth as well as from the bottom through his trach hole. Noah will need extensive reconstructive surgery in about a year to open up his trachea and allow him to breathe naturally. Along with the fusing of his trachea, Noah's vocal cords have fused together. Dr. Dunham does not think Noah will be able to vocalize once the trach comes out. While we are devistated by the news, we are always looking for the joy and humor in every situation. God has placed us on this path and the amazing people we have met along the way have greatly touched our lives. We're excited to see what God has in store for The Jackson family as we all learn sign language.
I'm sorry to hear that the news wasn't as good as you guys would have liked. You have been through so much that I know you will be able to tackle this new obstacle. We love you guys and look forward to seeing you in a few months.
ReplyDeleteI did sign language when I was young, and if I can do it, Noah can too :-) !!
ReplyDeleteWe are praising God for the good news about Noah's visit with Dr. Hodge...remember, poopie diapers don't last forever...thank goodness :-) We will be praying for strength for the Jackson family concerning the news on Noah's trachea and vocal cords. For us, even though it was only for a couple of years, sign language was a true gift that made us able to communicate with our precious son, Avery. For me, personally, I have often thought about learning more sign language; I just have never taken the time to do it. Now, I have a very good reason to learn more and I am looking forward to making the time to do it!
ReplyDeleteHey Jackson Clan,
ReplyDeleteI just wanted to tell you that we are still contending for Noah and your family. We love you all so very much and are continually blessed to be updated on what is going on in your lives.
Love, prayer and hugs your way!!
Hmmm, another tool to add to your ever expanding tool box... sign language! Just think of all of the new things you have learned these past few months. I understand that another challenge is, well, challenging, but the good news is fantastic, I love hearing about how his health is ever improving. As always, sending our love and any team spirit you need to keep you boosted and trucking along on this path with hope and joy.
ReplyDeletexoxoxox Amy Brian and Owen
Glad to hear the good news, and my heart goes out to you all concerning the unexpected news of the trachea and vocal cords. I want you to know that our church here in Korea often prays together for Noah and you two, as does the Evans family. We will continue to stand with you in prayer for precious Noah. Lord bless you all.
ReplyDeleteThe Evans family
God must think you guys are very capable to handle yet another challenge. And everyone who knows you both will confirm you can take this on. Lots of love to you all!
ReplyDeleteDo I not recall Noah signing "I Love You" many many weeks ago? The boy is brilliant. I know how disappointed you must feel about the trach and vocal cords, but there is so mych more to life and love than a mess of verbalization. Two of our grandchildren were masters at signing before they could verbalize - the other two had lazy parents! Go Noah Go!!!
ReplyDeleteWe were so happy to hear that you will finally get to change a poopy diaper. I know that will be a glorious day. You all continue to amaze us with your strength and courage as you prepare to tackle yet another obstacle. In the meantime we are still praying for miracles. Lots of love to all of you!
ReplyDeletePS. I am sure someone has already told you but check out the signing time videos. They are made specifically for babies, but as someone who took several sign classes I too learned from watching them with the kids I used to nanny for. They are great and I think Noah will love them.
I sorry for the disappointing news, and excited for the good news. Noah has been awfully busy lately... Learning sign language will be a challenge and an amazing gift, and another way for you guys and Noah to touch the lives and many others. It may be discouraging now, but you will think it a blessing in his teenage years - I little cheeky;)
ReplyDeleteI love you guys and will continue praying for all of you.
Love,
Shari
Prayers for you three!
ReplyDeletePrayers of thanksgiving for your good news and prayers for strength for the difficult news and the difficult times yet ahead of the 3 of you. You are such shining examples for ALL of us to watch and learn from. God bless. Love and hugs, Cousin Sue in AZ
ReplyDeleteWe'll continue to pray for you on this journey. It is going to be neat to see how God uses Noah throughout his life to minister to others.
ReplyDeleteHi!
ReplyDeleteThat is great news about the Colostomy. The bags can be so messy and unpredictable. Clothing is also easier. Seeing poopy diapers is exciting. I promise! When Peyton went through the reversal, we anxiously awaited the first poop and rejoiced when it appeared a few days after the surgery.
I'm so sorry to hear about Noah's vocal chords being fused. When we first met you at Children's we knew right away you were an amazing couple with amazing strength that God intrusted his little Noah with. I know whatever path God lays for you, you will walk with Him and make the best of it. (We might join you in the speechless aspect as well as Peyton has never cried.....) We'll journey with you.
Oh, I just lost my breath reading about Noah's possible non-vocal communication. I wish I could hug you all through space - what a HUGE obstacle!
ReplyDeleteYou are in a good locale for learning ASL. I didn't start learning until college, and Fresno, Clovis, Reedley and Madera all have AMAZING teachers. You might even find someone willing to come to your house to teach you guys. There are SO MANY resources available to you along that venue!!! I praise God for placing you in a cornucopia of resources for that. If you need ANY recomendations, or a sounding board of any kind, please feel free to call or email me. I'm in Dallas working as a counselor, ASL interpreter, interpreting instructor and ASL instructor, but have maintained strong ties with the Deaf community and Interpreting community in Fresno.
Praise God Noah has his hearing... that'll cut down on literacy/language acquisition issues.
Also, you never know what God has in store. I'll pray that Noah's vocal chords are restored so he can sing and talk with you guys!
Bless you all.