CPAP and Elephants!

We have had the CPAP for almost 2 weeks now! Connor has amazed me how quickly he adjusted to it- and boy are we thankful for that!!

The day it was delivered, we couldn't even try out the mask to be sure it would be a good fit. Connor wanted nothing to do with any of the new equipment that entered our house. As soon as the respiratory therapist left, I tried the play approach. He wanted nothing to do with being an "elephant" nor did he like Mickey mouse wearing the mask!

Josh and I had a workout the first few nights getting it on. With my peds nurse experience my first thought was to slip socks over his hands and tuck in his sleeves of his pajamas. That was the trick.... Until he figured out how to get those off! Hehe After several days we quit the socks and continuously watched him on the video monitor to make sure he didn't pull it off! We have been up many hours checking on him- that paranoid mommy thing takes over sometimes! Now it seems we are up to fix the mask back over his nose from all the wiggling around.

5 Days later he willingly sat there and smiles when we ask if he is ready to be an elephant! :) Not to mention we could put it on all by ourselves, instead of Josh and I ganging up on him. He now wears it during nap time and all night. The best part is he falls asleep way faster than he ever has... there are no more hours between when we put him to bed and actually falling asleep!

Hopefully he feels better since he is now getting restful sleep and actually able to breathe all night. He is still VERY active but we are definitely noticing an increase in his speech!

Sleeping away!

Cool Dude!

A peak into our sensory world

Connor finally got his OT (occupational therapist) evaluation- this was his 3rd one! Every other time he had the evaluation he was doing fairly well and didn't qualify for OT, but since he has gotten older he has shown alot more sensory issues.

The OT is absolutely AMAZING with Connor! The first visit Connor had warmed up to him and was actually sitting in his lap at one point! That is huge considering it usually takes him a while to get comfortable with new therapists. After the evaluation, Connor scored at the 13 month old level (tough reading that!) and definitely qualified for OT. He also shows signs of Sensory Processing Disorder. Last Thursday was his actual first therapy session. His OT has started Connor on a sensory diet. Let me explain real quick what that means : a sensory diet is a specialized plan that involves specific sensory activities daily.

 Here is what his diet consists of :
Body brushing every 2 hours while awake
Joint compressions after each brushing
Swinging forward, sideways, and a little in a circle
Bouncing, rolling, and jumping on exercise ball

 Ok, ok...I know sounds a little odd but it has done some impressive things within the first full week! Connor has been talking up a storm! New words we heard this past week are : "I got it!", " Peek a boo!", " Shoe", "mouth", "more" and he does the sign more at the same time, " up", "outside", "tree", "toes"...there are more I just can't think of all of them right now. Regardless, that is a huge improvement from the few words he would say!! He is starting to focus longer and better with certain activites, so I hope that improves! That makes it much easier to try to teach him things :) Happy   Momma right here!


 The Wilbarger Protocol is the brushing and compressions ( as I call it, "Brush & Squishies!") that we are doing. It is a deep pressure technique that is used in kids with sensory defensiveness. The purpose is to help "normalize" their sensory processing so that they can function better in their environment. Here is photo of the brush that we use:

                      

So Connor seeks out sensory input ( proprioceptive dysfunction) hence why he is always so active, craves movement and tippy toe walks. He has vestibular (a system that provides input for movement, balance, spatial awareness and positioning) dysfunction. We are trying to help with this by swinging- which he absolutely LOVES now! 2 months ago I am sure our neighbors thought I was torturing him in the swing, he would scream within 1 minute of being there. Now it is an amazing calm thing for him! He actually fell asleep in the swing- I never imagined that would happen!

 The swing is set on 1 hook so we can go forward, sideways, and in a circle:

                                    

  

He also has tactile dysfunction: meaning he doesn't do well with certain textures. For instance, if he falls down in the yard he tries to figure out how to get up without having to put his hands in the grass. He will quickly touch the grass to get up, then immediately brushes his hands off. He won't touch pool noodles,sand, or scratchy things. But he will constantly rub really soft fabrics. I am making a sensory box for him, full of dollar store finds so we can work on this! :)

All the goodies that are going in the box: rice, noodles, beans ( all of which I dyed to give it a better visual appeal), Legos, sponges, pot scrubbers, pipe cleaners, rubber animals, silly putty eggs, bells, foam letters, cars, and shovels. Basically a hodge podge bucket full of different textures to play in!

My next project is to figure out how to sew him a weighted blanket to help calm him when it is time to sleep. Right now it takes him forever to wind down and finally fall asleep.

Today he did great with OT! He was very focused and almost looked like he was so chilled out that he was ready for a nap at 10:30 this morning! I am hoping that all this sensory input and the sensory diet continues to help him, not to mention help keep Mommy & Daddy sane since it calms him down a little.

2nd Birthday, Sesame Street Style!

Happy 2nd Birthday to our little man!!He had his party at the little gym, it was super easy for me! All I had to bring was food & the cake and the rest was taken care of! I am glad we decided to do it away from home because I am not sure what we would have done with all the kids because it was chilly and cloudy outside. It is so hard to believe Connor is 2! It sure has been a bumpy road with a lot of highs and lows but he continues to smile and be our strong little fighter that he has always been! Here are some photos from the party! Connor is obsessed with Elmo and throughly enjoys Sesame Street- hence why I went with this theme...not to mention the primary colors of the little gym matched perfectly!

 The Birthday Boy!

Setting the tables up

Elmo cake ( made by me!) and Connor's little cupcake (gluten and milk free)

Oscar the Grouch Dirt cups (so easy: chocolate pudding, whip cream, oreos & sour gummy worms)

Cookie Monster's Cookies (made by Heather McCants)

Dorothy's Goldfish

Birthday Balloon wreath (made my me)

Make a wish sweet boy!

Our little family

These favors were made by me as well. Since Elmo's goldfish is his favorite, I decided this was perfect. I really wanted to do real goldfish but the hubby vetoed that idea! So I melted glycerin soap, put a toy goldfish in the soap, and then waited for the soap to harden back up. I forgot to get a photo of the tag but it said, " Elmo loves his goldfish & crayons too, now so can you! love, Connor"

Connor did actually taste a few things at his party! He had a little taste of his special cupcake, grapes, Cookie Monster cookies, pepperoni, and a ruffles chip! It did him good to be sitting at a table with other children eating! Happy Birthday Connor! We love you to pieces!!

Tubes, sleep apnea, & 2 years old!

Age: 2 years!!
Weight: 23 lbs
Height: 32.75"



As you can see, we now officially have a 2 year old! Ahhh, where did these 2 years go?! Well, he had a fabulous birthday party this past Saturday. I will make a blog entry on just the party once I receive the photos! For now I want to update on everything since the last post.

Connor got his tubes several weeks ago. His ENT was going to remove his adenoids if they were enlarged, but those weren't the issue. He also did a scope to look around while Connor was under anesthesia and discovered that his vocal cords are part of the sleep apnea issues, not his laryngomalacia. Apparently when Connor was in certain positions, the vocal cords didn't move properly which caused him to quit breathing. So our next step is for him to wear Cpap when he sleeps! :( I imagine this is going to be a huge challenge with my strong, wild, determined little boy! He has to have another sleep study so they can adjust the cpap settings to determine what works best for him. Looks like another sleepless night at the hospital for this Momma. The study is scheduled April 23rd, unless someone cancels then we can go sooner.

*At the hospital with Daddy*


As for his ears, things have improved! He no longer has infections, he is babbling alot of new sounds that we have never heard, randomly tries to repeat something we say, his balance is improved slightly, his vomiting has decreased, he is putting alot more foods into his mouth, and lastly his hearing is 100% perfect now! I wish we could have gotten these tubes months ago! I am hopeful that his speech will continue to improve over time now that everything doesn't sound like he is underwater.



As far as development, he has some "quirks" that we are noticing more that he is getting older. He still tippy toe walks (forward and even mastered this walking backwards), arm flaps, doesn't really responsed to his name being called, becomes frustrated when you won't let him open and close doors or cabinets repeatedly, is full of energy (ie: running and constantly stays moving),takes 1-2 hours to calm down and go to sleep, cries at the sound of rain hitting the roof and motorized carts at the store, and many other little things. I know he has some sensory processing issues, but we are still waiting for an OT to come in our home. He also has been on a waiting list for another OT in Hartsville for over 7 months. I am anxious to get these therapies started, hoping they will help Connor tremendously. We are also on a waiting list for a developmental pediatrician who deals with preemies and developmental issues. While I talk about lists, he is also on another list for a care evaluation ( which is an Autism evaluation). He scored at high risk for autism on the M-Chat screening that his EI did. The CARE evaluation takes around 6 months to get into so we decided it wouldn't hurt to get on the list. If the time comes for the evaluation and he doesn't need it then great, but if he does then he already has a slot. We are not really sure what to make of all of his quirks: is it preemie related, due to all of his constant health battles... the list could go on and on. Regardless, we love Connor- he will always be perfect in our eyes and we are willing to do everything needed to make his life easier.

Please continue to pray for my dad and mom. Dad has his last day of radiation today in Charleston. He has completed 6 weeks of radiation and 2 rounds of chemotherapy. He has lost alot of weight, hurts pretty bad, very tired, and hates being away from home. We are hoping and praying he will be back home soon and that his recovery will go smoothly!



Ok....be on the lookout for the birthday party pictures soon! Gaby's (Kennedy's mommy) mother offered to take pics at the party since she said she needed some practice with action photos! And with 14 children running around, I hope she got plenty of action practice! ;) I can't wait to see the pictures!

Ear infections

Age: 22 months/ 19 months
Weight: 21 lbs 3oz
Ht: 32 inches

So Connor has been dealing with nasty ear infections. He now has received 2 separate rounds of Rocephin shots to get rid of the infections since he doesn't seem to respond to oral antibiotics. Rocephin shots are daily for 3 days... Not fun for a toddler, he definitely doesn't trust anyone in scrubs now!! It seems he starts to make progress eating, then gets an infection and refuses food and vomits alot. After battling ear infections, severe speech delay, balance issues, and vomiting- we decided it was time to get some tubes put in his ears. His pediatrician set up tubes with the ENT we followed up with in October after finding out he had laryngomalacia. Everything was set up, then we had some insurance issues and decided it was in Connor's best interest to see a different ENT. And boy am I SO glad we made the switch!  It has put the tubes off a few more weeks than we originally had, but what is a few more weeks after all of the issues?!

The first visit was last week and his new ENT spent so much time with us! I was thrilled to have a doctor that wanted to know  everything that has happened in Connor's short life (even not ENT related). I think it is good for his doctors to know everything so they can see the full picture, just so thankful for him spending so much time with us.  After examining  Connor, he knew tubes were needed but he also wanted to do a few more tests. He had a hearing screen done since the only one done was in the NICU. Basically, his left eardrum had no movement and the right eardrum had very little movement. This is common when fluid is present in the ears ( which is in his) but also explains why he has so much of a speech delay and balance problems. So he will have another hearing screen after tubes are placed, and hopefully everything will be much improved and not permanent.

With Connor having a diagnosis of laryngomalacia ,his doctor wanted him to have a sleep study before the tubes. That way if he needs anything along with the tubes, he can do it at the same time. Let me just tell you, that sleep study was absolutely NO fun! So many cords coming from the head, face, nose, chest, and feet...not to mention an upset little boy with his hands bound up to prevent him from pulling everything! After getting him calmed down and asleep, the battle of keeping him off his belly began. basically every 10 minutes my eyes opened and I had to roll him off his tummy.  At 4am we were sent home from the hospital because Connor was wide awake. I was pretty sure the sleep study would be perfectly fine, but it was something that needed to be done to rule out some things. Well,  I heard from his pulmonologist yesterday who just so happened to be doing the results of the study.
 Turns out he had about 5 apnea episodes every hour- boy was I shocked to hear that! He was sending all the reports to his ENT, so hopefully we will hear from him soon about the next plan!
* Mommy and Connor at the hospital before the sleep study began*

* The not so happy Connor*

I am hopeful that once we get Connor's ears taken care of and the apnea issues , that he will catch up on the speech issues and hopefully consistently eat food by mouth. I am praying this is the small puzzle piece that was missing! :) I will keep you all updated, tubes are scheduled for March 6th.

*He is a pro at slides now! *

* Connor and his NICU friend, Kennedy at the park*

I know this blog is about Connor, but I just wanted to ask for prayers for my Dad. He was diagnosed with tongue and mouth cancer in November. He had a very long surgery in January ( at MUSC) removing half of his tongue, reconstructing it, and had a trach placed. Yesterday he went back down to Charleston and had his first chemo and radiation therapy. He will have to stay in Charleston for about 6 weeks for daily radiation and several doses of chemo. He has been so tough and impressing all his doctors with how well he is doing. With him staying in Charleston so long, my mom is having to continue to work and stay home to take care of my Grandmother ( Dad's mom) who lives with them. Please pray for strength for my Mom and Dad, thanks everyone.

Please forgive me...for I have no spare time!

It has been a little over 4 months, please forgive me for not updating!  I will give a quick "briefing" to catch everyone up. :)

Age:20 months/ 17 months
Weight: 20lbs 13 oz
Length: 32"

GI: still not eating by mouth. We have started him back on the appetite stimulant within the last 2 weeks and have noticed an increase of interest in food. He will eat an occasional piece of food, small pieces. He is getting better at controlling his gag when he has food in his mouth! (Of course we are alway happy when there is less vomit!)

He is now seeing the feeding specialist in Spartanburg. Her goal is to get Connor's weight up to the 15-20th percentile before we work on weaning his gtube blenderized foods. We have learned that Connor can't handle straight oils added to blends for easy extra calories- that is a sure fire way to make him vomit, so weight gain has been super slow! Of course he continues to get feeding therapy weekly. We do food play 3 times a day and continue to feed him (gtube) every 3 hours during the day.

Lungs: Connor had a bronchoscopy and surgery on his boy parts in October. He had the bronch to just to make sure everything was fine since he always has a dry cough. The bronch showed "paralyzed vocal chords" and mild laryngomalacia (softening of the larynx).  He was then sent to an ENT to check the vocal chords without any anesthesia: the vocal chords aren't paralyzed, they are just immature. Not really sure what that means, but we will continue to monitor the chords. :) he also had a sweat chloride test done to rule out cystic fibrosis last week-that test was negative.

Connor continues to get physical therapy. He is doing fairly well  with his gross motor skills. He walks, runs, squats, and climbs on tables and sofas now! He has started walking on his tippy toes again, we have recently noticed that increase within the last month.

Speech therapy is weekly as well. He has a severe speech delay. I am having a tough time with this- we try so hard to teach him, but he just doesn't focus on us long. He used to say "Mama", "miyo", and "bye bye" but he  doesn't say mama now, rarely says milo, and bye bye has turned into "aba". He will occasionally do the animal sounds for a lion and cow, but he has been stuck on those 2 animals for a long time. I think I make animal noises in my sleep because I say them so much, but Connor doesn't seem to get it. I am not sure if  his speech is so delayed due to the feeding issues (decreased muscle tone), immature vocal chords, prematurity, or other causes.  I see him around other children his age and I get really disappointed when I hear all the things that they are saying.

Several of his therapist have noted autism like characteristics in Connor. It has been suggested that Josh and I start talking about doing an evaluation for him soon. Josh and I are discussing it, and have decided at this time we will continue doing all of his therapies and let him develop a little more.  I am noticing how hard it is to teach him things because he is too busy to sit still, he is constantly on the move, slightly clumsy with tippy toe walking, has trouble focusing in one thing, does some  occasional head banging in the car seat and high chair.I know he has major sensory issues and we are dealing with a wild toddler boy, so I want to give him the best I can with therapies to see how things advance.   We are hoping to  get another occupational therapist to help him with this soon.

WHEW! That was a whirlwind update! So I will try my hardest to update sooner. I have had a lot of people ask me how he was doing because so many people have been praying for him.  I apologize for taking so long, as you can see I stay super busy with therapies, appointments, work, and everyday duties!

Back to the hospital, EGD tomorrow

Wt:19lbs 5 oz
Age: 16months/13 months

Enjoying his new swing in the backyard

After the GI visit last week, he decided to go ahead and schedule an EGD- Esophagogastroduodenoscopy is a test to examine the lining of the esophagus (the tube that connects the throat to the stomach), stomach, and first part of the small intestine. It is done with a small camera (flexible endoscope) that is inserted down the throat. Connor will have anesthesia for this procedure, which always makes me nervous. I know he is in great hands, just the word anesthesia makes most parents nervous.

He has had an EGD last October after the feeding issues started ( it is hard t believe that September is a year since all the feeding issues started!) The last EGD showed severe inflammation and the biopsies where all normal. His GI doctor wants to make sure his Nissen hasn't "slipped", check for inflammation, and do biopsies again. I am anxious to find out the results. Of course I don't want there to be anything wrong, but obviously there is or else Connor wouldn't resist feeding and vomit so much. I believe there is a missing puzzle piece to our complicated Connor and I am beyond ready to figure out what it is. I will update afterwards.

Also at his appointment weigh in, Connor had gained an entire pound the first 4 weeks of the blenderized diet! His GI doctor was quite impressed with the gain! Unfortunately, this week he has lost again. This is from us cutting back the number of bolus feeds we give him to encourage hunger and all the vomiting. I have a feeling we will be adding one feed back so his weight doesn't continue to spiral down. I didn't expect for him to gain once we cut back but I wasn't expecting a 6oz loss.

One last update...we officially have a walker! He is doing a few steps then goes down. We are practicing a lot but he rather crawl since he can get there so fast! Walking or crawling, we have a curious little boy who is constantly looking for trouble!! :)

Trying to climb the baby gate