NICU visit

Just a few pics of our NICU visit last nite. Braden had a scare with a loud noise and had a hard time recovering... he wanted his Mommy. So we couldn't get individual pics of our friends holding him. Maybe next time we will get off to a better start. We had a great time and really enjoyed our visit.

Quick update

We were pleasantly surprised today. Braden passed his passy muir evaluation. He can wear the device a few times a day for 30 minute intervals. We will encourage him to laugh and try to get him to make sounds. We are so excited. We are also on the list for speech therapy. We are looking at the end of May for an opening. Not bad at all and in the mean time I have advice from Vandy on how to get Braden started. :-)

Trip to East TN

We just got back from our trip to East TN. We had a wonderful time and really enjoyed our visit. Thanks to Nana we had a wonderful picnic so everyone could finally meet Braden. Braden loved every minute of it. He did amazingly well and was very social. He also endured the drive better than anyone could expect. It was so nice for Braden to finally meet his cousins (Matthew, Riley, Avery, Corbin, Emma and Sadie). He also met his Great Grandma Harris. We want to thank everyone who made it to the picnic. It was so nice to see everyone. Braden is now fast asleep. Completely exhausted from all the activity. Glad to be back home in his own bed.

New pictures

Stephen is out of town visiting family and friends. So my sister and her kids came by to keep Braden and I company. During the visit we took some new photos. They can be viewed on my sister's photography blog. Please visit the link below to view the photos.

www.momentsbypaula.blogspot.com

Some new video

Braden in his door jumper. I hate he won't be able to do this once the cast goes on. He loves it so much. Notice at the end of one of these he takes off his nose. He does this constantly now. I am telling him NO and signing NO... not working. ha!

RSV shot

Well I called Blue Cross Blue shield this morning and asked them if Braden was really being denied for his RSV shot or if this was a mix up. Well just so happens the letter they sent to the Pediatrician was in fact the original denial. So we were actually still approved. We almost missed our window because the approval deadline was today April 17th. Thank goodness Nana hadn't gone back home just yet. We were able to go back to the Pediatrician just after lunch and got Braden his shot. More trouble but not more than it was worth. Not in this case. lol :-)

Braden also had another feeding therapy session today. He did fantastic. We are so thrilled he likes his therapist and does what is asked of him.

Braden's 15 month check up

Well I am happy to report Braden is officially on both the weight and height growth charts. He is 27 1/2 inches long and 21 pounds. We are transitioning him to Nutrin Jr. which is already pre-mixed. Yeah! We are also transitioning to one feed per day of puree's only. :-) Previously, we'd feed him by mouth and still tube feed the same amount right after. Unsure why... but now he will be able to have just one feed per day of puree's only. So maybe he'll have a chance to get hungry. Today he had a 4 1/2 - 5 hour stretch without food. So, he ate an entire jar of bananas like a champ. That was out of his carseat. Overall, today was good. However, we did have a few disappointing things happen...first insurance said they would pay for Braden to have an April RSV shot. Then they denied us. So he doesn't get to have one this month. Our Pediatrician said that usually they won't pay for a shot in April so don't expect one next year either. :-( The second not so good news... we found out both Braden's legs are out of the hip sockets. The surgery schedule won't change and it is what it is... recovery time and casting are the same.

Just want to thank all of you again who continue to follow the blog. It's so nice to have so many caring people watching over Braden and his progress.

Braden's hip surgery

Just a quick update from our meeting with the Ortho Dr.. Since Braden had his really bad yeast infection in the NICU. Dr. Mencio wants to reserve the right for Braden's May 11th surgery to be exploritory only. If he finds that Braden's hip will pop back in easily then he'll complete the surgery that day. If not and he sees that Braden requires a more extensive surgery then he will schedule another day. I asked Dr. Mencio if there was any reason to be worried. He said no whatever the case he can fix the problem. He just doesn't know how much work it'll take to fix it.

One more thing. The feeding therapy the other day went really well. Braden's teacher showed me a new technique and it is working great. I am more than thrilled.

Braden update

Yesterday we had two Dr. appt.s. One was a routine visit to the Urologists. All is looking really good. Braden's hydroseals are very small so our next visit will be 6 mths from now. We also visited Dr. Goudy (Braden's ENT). We discussed Braden's growth, fluid on his ears, nissen surgery and Braden's gagging issues. In all that conversation we have come to some added services to Braden's upcoming May 11th surgery. He will receive a new larger size trach, tubes in his ears, and they will scope Braden to see if his airway is healing. We will hopefully get a more detailed report and next steps concerning the trach. I love that our Dr.'s make sure they do everything at once instead of making us do all these things separately. It's easier on all of us. I am still waiting to hear back from GI. Since Braden has obviously loosened his Nissen surgery which has resulted in puking again. We are thinking he will have to get back on meds.. Bummer :-( GI just so happened to try and call when we were in the parking garage so I missed them. I am hoping they will try again today. Last nite was horrible. Braden's pulse ox isn't connecting well and went off all nite long. I also put Braden's apnea belt on while he was sleeping. I hated to wake him after such a long day. Well the belt loosened up from Braden flopping around in bed and it kept going off too. Fortunately none of the comotion had anything to do with Braden. He was just fine and at least he got some sleep. :-) We also had our first PT session and it went very well. Braden despite being tired showed Kim some things she didn't see him do during the evaluation last week. She was pleased. He also threw his hips over and almost did a complete rollover. Which I hadn't even seen before. That was a nice surprise. Kim said give him two weeks and I'll bet he will be rolling all the way over. Today we see Braden's Ortho Dr.. Dr. Mencio just for a question and answer session on Braden's upcoming surgery. Tomorrow will be Braden's first feeding session. Yay! I am so excited.

Some cute video of Braden

I thought I'd share some cute video of Braden practicing sitting. In one he actually gets excited and tips over at the end.:-) He is so funny. Ever since he got his teeth he has been sticking his tongue out regularly. His Daddy made it into a game. They have so much fun together. I love the weekends. Braden enjoys them so much. If I haven't already told y'all Braden does sign Daddy. That's the only sign he has picked up on. Guess who thinks he's number one now? Oh and he does rub it in daily. Imagine that....

Therapy

Well our big day was a success. Braden and I did great on our short road trip. Braden decided to take a nap for the ride to therapy. So we filled out paperwork and chatted with the therapist so he could sleep. Once Braden woke up it took a short while for him to warm up to Sharon and Kim. But once he did he was ready to roll. I am so proud of him because he showed them everything he knows. He also wow'ed them with his new abilities that I didn't even know he had....:-) Kim held Braden while Sharon showed him some small blocks. Sharon handed him one and he grabbed it with his right hand and then transferred it to his left. Then she gave him a second block. She showed him two more blocks and sure enough he dropped one from his left, transferred the one from his right hand into his left, and then grabbed one of the two blocks she was holding with his right. O.k. so maybe you all think this is small. But to his Mommy who has never seen him so focused especially with strangers this was amazing. Not to mention I had never seen him multi-task with so many objects at one time. He also let Sharon feed him. He quickly fell in love with his new found friends and was very attentive and ready to work. He actually lasted over an hour. I think all three of us were impressed. They also said they could tell Braden is very smart and that he is most likely right handed. For now Braden will see Sharon for feeding therapy once a week and Kim for PT once every other week. PT will increase once Kim's schedule opens up. On first evaluation Sharon said Braden will probably be getting some OT as well. That will be determined once they see how he does with his other therapies. Our homework assignments are with PT more tummy time. I have to make it a game and keep him on his belly for short periods before letting him roll back onto his back. For feeding we were sent home with a tool to encourage chewing reflexes.

Braden's Passy Muir eval.

Today was interesting. Braden was a little intimidated by the speech pathologist Melissa. So, he took a little longer to warm up to her than others. Melissa did a simple test by placing her finger over Braden's trach hole. This test lets her know if he is able to breathe a little on his own and exhale thru his nose. He did o.k. but Melissa said Braden isn't ready yet for the valve. She said they typically work with a child once per month until the child is ready. The factors are growth and development. Melissa gave us some homework to try and get Braden to babble. She said even though he can not make any sounds he can immitate speech. I assumed Braden would not immitate me if he couldn't hear himself. Apparently, that is not the case.

Our appointment for feeding eval and physical therapy eval. has been moved up to 11:30 tomorrow. I am very excited. This will be the first trip Braden and I have made alone. I have never attempted to drive anywhere without an assistant because of Braden's trach. Lyttle foxes is only a short distance without interstate driving. So we think it'll be an easy trip with plenty of places to pull over if needed.

I will try and post pictures tomorrow from our therapy session. That is if I can sneak some in without being a distraction. :-)