Well, the time has come. The time a lot of parents dread. The first day of school! Not that we don’t want our kids to learn and become socialized, it’s just ( for me anyway) we’re going to miss them! For the past 3 years, it’s been Dex and me. When dad’s at work, mom and dex head to therapy where I ( mom) can sit in and watch. In school, I can’t be there to hold his hand and give him kisses. But, you know what? We are so incredibly thankful for the opportunity to go!
Yesterday was Declan’s first day. He attends a pre-school for kid’s with all types of special needs and it’s going to help him thrive! It’s through our school district ( which we love ) and he will be there for 2 years until he starts kindergarten. We knew after he had his IEP the Lord put us in the right place. Even his therapists had nothing but great things to say about his new school.
I’ll admit, it was really hard to let him go but his teachers are pretty amazing and I felt relieved and also confident in our son. The days will be long for Dex. He will attend school 5 days a week for about 3 and a half hours a day along with his daily therapies. Today, his second day, he was quite exhausted. I’m writing this around 8:15pm and he’s already out for the night. It will take some getting used to. Also, since Dex has low muscle tone and bell shaped ribs, his little body has to work twice as hard as some typical kids andbecomes very tired quickly. I know being in school will help build his stamina and he will become stronger.
Here are a few snap shots from the beginning of this exciting new adventure!
Dad made Mickey Mouse pancakes for our first day of school Breakfast. Dex was super excited and ate them both! ( Do you see that fork holding?!! Good job buddy )
We were a little early for drop off so we waited around a bit for his teacher and all of his new friends.
I had lots of fun preparing his lunch for his first day. These Planet Boxes are perfect for toddlers
Here’s a picture from today, day two. It was a bit harder to say, see you later for him but after a while he was great.
All in all we are so thankful to the Lord for allowing us to experience this. Praying for many years of great reports and super happy smiles from our little school kid.
Hey guys! So, it’s been a while for new updates but before I catch you up on update posts, I have to share our great news today.
Remember when I mentioned previously that Dex would have to have a revision to his previous procedure? Well, today we got the amazing news that he does not need the surgery. Thank you, Lord!! The hydrocele should clear up on its own and there are no more hernias at the this time. A huge weight has been lifted and we are so relieved!
In the next few weeks Dex will have his school assessment ( ahh school already ) and his IEP. We’ll keep you all updated and share the process we have to go through. Until then there are a couple of things we would ask that you join us in prayer for:
•Declan’s continued strength
•His allergy issues will clear ( more on that soon )
I thought I should update you before our new little babe arrives! I hope you all are doing well and this year is a good one. I can’t believe it’s already June!
Here are a few updates with Dex that I thought I would share. I’ll have more detailed posts soon…
We were able to move some things around so we actually have one day off during the week! Whoo hoo! Dex has a 3 hour session on Mondays & Fridays including group, individual PT and individual Speech. Tuesdays and Wednesday he has OT. He’s really been thriving and we are so thankful for all of his therapists and for early intervention programs!
Group Sessions have been so much better! He’s been interacting more with his friends and mom and dad have been able to step out and even grab a cup of coffee. AMEN!
Speech has been going well. He’s learning new things each week and talking up a storm. It’s still a little hard to understand him, but he tries so hard! He’s even counting to ten now and that is beyond cool.
Dex is starting to run a little , which is a great sign. He still has a ways to go, but we love to watch him run around the house or run around with his cousins. We’ll have a checkup with the orthopedic specialist soon.
Dex’s breathing is good. At night we still need to watch him as sometimes his breathing seems a bit labored. Normally I need to move him to a different position and that helps. We’ll need to keep twice yearly check ups with the ENT doctor to make sure his system runs smoothly
He still has a little trouble with controlling his saliva but it has improved dramatically! Almost to the place of not needing his bibs everyday. His Pediatrician put him on Zyrtec to help with his control. It’s more medicine, but it’s better than having him on the Robinul which made him so groggy and tired.
Dex and his appetite are basically best friends, ha! He eats a lot and we are so thankful for that. He’ still learning how to use utensils, but drinking from an open cup is going so well!
Some foods he has trouble with, like chips , pretzels and lettuce but he’s definitely improving.
These are just a few updates and as I mentioned before, I’ll have a detailed post coming soon! In the mean time we are getting ready for baby #2 to arrive! He’ll be here by next week and we are so excited and preparing for life with two cool babes!
Whew! It’s been a while since our last post and boy do we have lots of updates for you. I wanted to first say thank you! Thank you for all of your prayers during Declan’s last procedure. He came out of it like a trooper and we are so thankful to the Lord and all of you who thought of us.
This time Dex went in for what you call a Hydrocele. Here’s a brief definition below:
A hydrocele (HI-droe-seel) is a fluid-filled sac surrounding a testicle that causes swelling in the scrotum. Hydrocele is common in newborns and usually disappears without treatment during the first year of life. Older boys and adult men can develop a hydrocele due to inflammation or injury within the scrotum
Declan was not born with this, it actually developed over time. While in most cases this condition goes away on it’s own, in our case it was recommended that we have surgery to repair it due to the size. Of course we were not happy to hear he had to go under again, but we know we have been led to right doctors and nurses so we were confident that he was in good hands. When the doctor came out to give us the update we were surprised to find out he actually found ANOTHER hernia! Boy were we glad they decided on the surgery, and again so thankful. His doctor was able to repair the hernia at the same time which was a relief!
After Declan came out of from under Anesthesia, you would have not believed he just had surgery. He was running around and paying with Bodie like normal. He was a little sore but, WOW, this kid is just something else. We were pleased. After a few days he was up and running as he normally would. My mama heart was at ease, well for a couple of weeks then we received more news…
After 3 weeks we went back for a check up and we a little concerned because Dex was still very swollen. We knew to expect swelling and bruising but this was a little excessive. After his checkup the doctor looked at me and said the words Mike & I were dreading – The Hyrdocele came back. Awesome. My heart dropped and the doctor literally put his hand on my shoulder and said I know this is annoying. He said it can happen and he’s seen it many times. Unfortunately for Declan that meant another possible surgery. UGH! The good news is we don’t have to go in right away. He advised us to wait at least three months since he’s so young and it can go away on it’s own. If within 3 months he is still swollen, you guessed it, we go in again. Another procedure and the 6th time Dex would have been under anesthesia since he was born. Okay Lord, we know you won’t give us more than we can bear so we are trusting you and believing that all will be okay.
So, that’s where we are today. It’s been 5 weeks since his surgery and now we are just waiting and checking Dex daily (multiple times a day ) , preparing for our new baby and living each day with a smile even though it’s hard sometimes. God has us and we’re clinging to him! Would you join us in prayers for Dex, his well being and our family? We so appreciate you and all of your good vibes.
I ‘ll have more updates in the next couple weeks including an update on his group therapy sessions!
It’s been a bit since out last post and so much has happened since then. Dex started speech therapy, we were told he only needs one day a week for individual PT and we announced baby #2 is on the way! Dex also turned the big TWO. There were many more things but I’ll save the rest for blog posts.
It’s been a couple of months since Dex has started speech and we have seen so much improvement! He’s said things like ‘mama ‘ & ‘daddy’ for while now, but hearing him say more words is so encouraging. Since seeing his therapist his new words are ” go”, “bubbles, ” hi,” hat,” “help,” and a host of others words he tries very hard to say. It’s so funny to hear him try to have a two year old conversation with you.
We had another full evaluation and as far as his understanding, he is exactly where he should be! You don’t know how ecstatic and thankful to God we were to hear that. There are a few areas, physically, that he is still a bit delayed in but that was to be expected due to his low muscle tone. But to be able to talk to him and he can understand is music to our ears. His will most likely be in speech for a while due to his low muscle tone and his inability to form words properly (for now). We trust that God is still working in Declan and He is still making all things work together for Declan’s good.
One of the things that we pray speech will help with is Dex’s mouth closure. It has been much better however he still has a little trouble controlling his saliva and keeping his mouth closed. Especially when he’s doing multiple things at once like playing with toys etc… I love his cute little bibs, I really do, but we are praying that he doesn’t have to wear them much longer and we don’t have to put him back on any additional meds.
That’s our request for you this week! In your time, will you pray for our little two year old. Pray that he will control his saliva , that he will have proper mouth closure and form words clearly. Your support of Declan means the absolute world to us and we so appreciate you!
It’s been a little bit since our last post and I’m so sorry for that! We have definitely been busy bees around here. If you follow us on Instagram, I try to give updates here and there on Declan and our little family. You can follow us over at @mrsbrum >>>
One of the amazing things that has happened over the past couple of months, is that I have talked to at least 3 different families with a child that has UPD14. They all found our blog! God is so so good and I love that we can connect with families and they can also connect with us. If you’re reading this please know you are not alone in your journey! ( Whatever journey that may be )
So, on to more good news >>
Every three months ( or 26 sessions ) Dex has an evaluation . Most kids in therapy have this to see what their progress is and if they met all of their goals from the previous eval. Today Declan had his PT (physical therapy ) eval. A few of his previous goals were: Climbing, kicking a ball, throwing, etc. Well, today Dex met all but one of his goals! The only thing we really need to work on is kicking ( for now). He tries, that’s for sure, but he needs to pick his feet up and actually kick the ball. We are sooo incredibly proud and thankful for his continued progress and his motivation to do every activity! Again, God is good and we are so grateful for the way he is using Declan.
We can’t keep him from climbing the stairs now, Uh oh!
Now, there are some things that we are still concerned about and we would love your continued prayers for:
Acid Reflux– Dex has had this since birth and lately it’s been flaring up making it a bit harder for him to control his saliva. We want to eventually take him off Zantac so we need your prayers for that!
Saliva Control – Dex used to be on a medication called Robinul which helps with saliva control. It basically dried up excess saliva. While we are thankful for modern medicine and the resources God has given us, I really am not thrilled with the side effects. Dex had dry mouth & it made him sleepy. So if we can avoid that, that would be GREAT!
Speech – Dex is trying his hardest to say words and we LOVE it. One of the things we have been praying for is, for him to form clear words. He starts speech therapy this Friday and we are very excited to see him soar!
Sleeping – Dex doesn’t sleep through the night. It could be totally normal but he works so hard every single day that it would be great for him to get a good night’s sleep in his bed 🙂
Neurological exam – Dex will have a checkup soon with the Neurologist. It’s mostly just a check up, but there are a few concerns with his muscles – how they act and re-act.
We know who’s report we believe!
So, that’s it for now. We’ll be back soon with updates!
Sorry for the extremely cheeky title but I just had to 🙂
This post is so late but I still wanted to let you all know how Declan’s surgery went. In a nut-shell it went well with no complications and he was up and running by the third recovery day. Of course Mike and I were a little nervous as to be expected. I’m sure anyone who’s child has to undergo a procedure would be a little nervous and praying that all goes well. Dex is such a trooper and God is always good, so we knew we needed not to worry.
The day before his procedure we all went to an Angel game, Dex had a blast with his cousins and it was just the thing we needed to relax before the big day.
The day of his surgery we arrived to the hospital and we were treated so well. This was a new place that we were not used to and we were a little unsure of how the process would be. But the staff was very accommodating and our experience was pleasant. Mike was able to go back with Dex as the anesthesiologist sedated him. It only took a few seconds and he was out light a light. The procedure began and so did the waiting.
(Totally blurry picture but Dex didn’t want to stand still, lol! )
Once the procedure was complete, his surgeon came out and explained everything. During the process, the doctor noticed that his hernia was actually larger than they had anticipated. We all knew it was large but his little belly had to have a little larger incision than planned. That also meant lots of extra skin. Right now, his “belly button” looks like a big flat piece of wrinkly skin. (It’s actually kind of cute ) . With time and as Declan grows, the skin will stretch and it will become more like a typical navel. Even though it looks a little strange and even a few little kids have asked “what’s wrong,” we are so incredibly thankful that we had the opportunity to have the surgery. Circumstances could always be worse and God is always faithful to us. Making all things work together for our good.
The day after Surgery
3 days later & as happy as can be!
** please ask to use pictures. please do not re-post or use without permission from Tia @ Dex & Bodie**