Day 19… The last few days have been positive for Ryder. We have seen more smiles and even a few giggles. It has done our hearts good to see and hear our Ryder Bear happy once again. He continues to progress to where he was mobility wise before all this began. Presently we believe he will need physical therapy in the months ahead. He has struggled to eat solids but is making strides to improve. We are seeing sleep to be a problem as well as Ryder fails to reach a deeper REM sleep.
On another note, big sister loves to share and gave her sickness to the rest of us, but we are all on the mend and quickly recovering. It has been quite the ride these last few weeks, but we are beginning to feel some sense of normalcy at the Howard Hilton!
Ryder has a follow up EEG and neurologist appointment this week. Results from extensive bloodwork will continue to come back in the months ahead to find a root cause for these spasms.
Julie and I have continued to be in awe of God’s strong hand on Ryder’s life. It has been a blessing to see how God has provided for us and Ryder’s health in so many ways. Thank you all so much for your continued support and prayers through this.
Day 16…Mackenzie is making improvements. Hopefully her cough will be resolved in the next few days. We are pleased with how well Kenzie is taking her medicine. I know she is very anxious to wrap her little brother up in a big sister hug!!! Unfortunately, Ryder and Mama are experiencing runny noses and slight coughs. We pray this is nothing too serious...especially for Ryder's sake! We are encouraged however to see Ryder Bear showing no signs of spasms on day 2 of his weaning treatment. He is now on one injection per day at 25% the daily frequency from weeks one and two. The statistics remain high that he could begin spasms as the dosage diminishes but we are hopeful our little man…well, not so little man, will overcome the odds.
Julie tells me an additional side effect of the medication could be facial hair…now I for one can get behind this one! As if Ryder doesn’t already look like daddy, let’s slap a beard on the boy!!! In times like these we cling not only to the Lord but the small joys and blessing that present themselves. Laughter is still a very potent remedy in which Julie and I benefit.
Our two little ones continue to bring us great joy and love as we travel the path God has prepared for us. We are ever grateful to our Heavenly Father for His watch care, grace, mercy, and love as we face the uncertain times ahead. What a true source of hope to know that nothing is uncertain to Him! Thank you all for your prayers and support in our time of need.
Day 13…Things are looking up. Kenzie has turned a corner and begins to recover from what was diagnosed as an ear infection and cold. She still has a bit of a cough but hope to see it go soon. It’s quite the job trying to keep her corralled from Ryder while she’s been sick. As for our chunky monkey, he continues to receive his treatment like a boss. We would like to see him sleep through the night a little better as he basically lives by the motto Life Is Food! We are grateful the spasms have stopped to this point. However, we pray that once the medication begins the weaning process, the spams stay gone! Please join us in this prayer. In the meantime, we continue to take Ryder for his vital check ups twice a week locally and will be leaving for GR next week for his first follow-up EEG. We have many questions for our awesome Neuro-team as we continue this road before us. Even still, we walk the path with confidence in who holds our tomorrows.
We are excited and humbled to see our support goal has been reached. Words cannot express how grateful we are for your generosity. We are in awe of the Lord’s provision and thank you so much for joining together in this way to help us in our time of need. God is good!!!
Day 11…Where to begin? It’s been a few days since our last update and we’re sorry for that. Since being home it’s been busy as we reacclimate into home life with the addition of Ryder’s medical care. Grandma Howard was able to keep Mackenzie till Saturday which allowed us to get squared away with Ryder at home before she joined the party. Ryder has adjusted to being home like a champ. He has been spasm free for 9 days now which is a huge praise. Other than a stomachache and weight gain (if you can believe it) the side effects have been minimal. He is no longer crying all day long. He is sitting up and playing. His chatting has increased, and his appetite has returned!!! We will soon be able to reduce Ryder’s medication and start the weaning process. As the medication reduces Ryder’s immune system should begin to improve. This is a blessing as Mackenzie has developed a cold. Please pray for her and us as we are all hands-on deck trying to care for Kenzie in one room and Ryder in another. This is not very enjoyable as Kenzie was and is so excited to finally be able to snuggle her brother. Unfortunately, this will have to wait until she recovers. “When it rains, it pours.” Julie and I are doing our very best to navigate the road before us and are greatly assisted by your continued prayers. We will get through all of this I’m sure as the Lord is faithful to provide for all our needs according to His riches in glory.
I will endeavor to keep everyone updated every other day or so of our progress and needs as many are asking how to help. At this point we are taking one day at a time. Once Ryder’s immune system has had a chance to recover, we may have more tangible and practical ways in which you can help. Currently your prayers have been instrumental. We love and appreciate you all so very much!!!
Day 8…Today was a great day! We received a call early this morning that the medications had finally arrived! Discharge paperwork was done quickly and we were able to come home!!! We even were blessed with 2 smiles from Ryder once home. The hardest thing during this has been seeing his smile fade into a blank stare. While we don’t know yet what all this means for Ryder, we had a very encouraging conversation with one of his doctors before we left. Ryder has many positives going for him. The road ahead will be long but we are hopeful to get the big and bright smile back on our Pudge Master. Thank you so much for your fervent prayers!
Day 7…Another day of ups and downs. We ended last night on a high with Ryder feeding by bottle and then nursing from mama. He is progressing quite well in the feeding department now. The feeding tube was removed, and my son is wireless once again!!! Today was not without its share of drama. We learned the medications we are waiting for had yet to ship (insert angry face)! The company that produces the medication dropped the ball here and now we are continuing to wait on its arrival Thursday…we hope! Once it has arrived, we can blow this popsicle stand! Ryder has been very good today and is currently sleeping in his mama’s arms. As I write this update, I can’t help but notice the way in which God has provided for us through your gracious and very generous gifts of love. From the bottom of our hearts, we want to thank you for your love, support, kindness, prayers, and care! We are truly in awe of the creator God and His provision through you. I’m reminded of Acts 4:34-35, none of you probably sold your land to help us but the idea of helping as each had need is very much evident this week. Again, we say, thank you!
Day 6...First of all we want to thank everyone immensely for your prayers last night and into today. Ryder was not doing well at all yesterday with all the crying and then add to that not feeding made it almost too much to handle. Julie didn’t have the best of sleep having to get up every few hours to feed Ryder via the feeding tube. Today, if you can believe, started off even worse then last night ended. The hospital ran out of Ryder’s treatment meds! Thankfully the new shipment was in transit and arrived soon after. Ryder was only 2 hours late in his treatment. PTL, it could have been far worse!!! Now, on to good news: Ryder was much more emotionally balanced today, crying less and sleeping more. He began to play a little and place toys in his mouth. The best news for us was seeing him smile and giggle and then…drink 6oz of mama milk from a bottle by himself!!!!!!!!!!!! My boys eating on his own again!!!!!!!! Praise the Lord, we have no doubt that the fervent prayers of His faithful children were and are instrumental. Please keep it up as we would still like to see enough improvement to get out of this joint. We are incredibly humbled and beyond grateful for the Lord’s provision in and through His people. You are our heroes!
Day 5 in the books and it was quite a chapter! Definitely the most difficult day. Ryder spent most of the day crying and feeling all out of sorts. He wouldn’t eat and spent a grand total of one collective hour napping. Unfortunately, one of the side effects of the treatment he is receiving is irritability and let me tell you…that’s no joke! A feeding tube was inserted this evening by which Ryder was finally able to get some nourishment. On a happy note, we have not seen a spasm since Saturday!!! Please continue to keep Ryder and Julie in your prayers…well, I’ll take them too as we are all in much need of rest. Hoping to be discharged soon, this feeding issue may delay that departure however! Thank you all so much for your kindness, generosity, thoughts, and prayers. We love you all so very much…God is Good!!!
Well it's been a long few days but God has been so good to us. He opened all the doors to get Ryder admitted, evaluated, tested, and treated. Thank you all so much for your prayers and support. Thank you Becky for creating this page and thank you all for your gracious help. We will continue to update this page as to keep everyone in the loop on Ryder's progress.