Family Pictures

We had extended family pictures taken at a local park this evening by one of my sister's co-workers. She did an excellent job for an amateur photographer getting her start. There were three dogs, two kids, and three sets of adults. Talk about a bunch to handle in a park after 6pm! We were bad and forgot to bring Macy for the pictures so Petey, Ralph, and Baby (my parents and sisters dogs) are all in the shots but our beloved woof is not. Don't worry, my mother let me have it for forgetting too! Here are a couple of shots from our modeling shoot (click to see an enlarged view). Enjoy the footage. I think they turned out pretty cute myself.

Adaptive Physical Medicine

Elias had his appt for adaptive phys med the last week of September. Dr. Batley was wonderful and the 2 hours we were there being assessed and evaluated were very well spent. Elias was weighed and measured in almost every since angle imaginable. His growth is awesome although he is still quite skinny for his height (about 3rd percentile in the weight-for-length category). He is 40.5" tall and 32 lbs. Such a long, long way from the micropreemie of years past. They tested his reflexes, walking, running, sitting, standing, etc. Elias thought most of the appt was playtime and couldn't believe that he was actually able to take his shoes off and RUN in a doctor's office WITHOUT shoes on!! The only portion of his assessment that involved a few moans and groans was the stretching and tone checking.

Overall things look fairly good. Dr. Batley found many soft signs of cerebral palsy. Elias has clonus more in his left leg than his right. His left leg is also tighter than his right and tends to drag when he gets really tired. His tone is hypertonic throughout with hypotonia in his trunk. Although his ankles are loose, Elias tends to toe walk about 80% of the time and that is a large red flag for them. Dr. Batley finally was able to tell us why Eli fall randomly and unexpected throughout the day as well. His IT Bands in his legs are tight. These are extremely hard to stretch but we have been trained to do it properly and need to stretch him 3 times a day for the next 4 months. When the IT band is tight is causes the leg to give out suddenly when it is tired (which Eli's legs get tired as the day goes on). This explains why our little splats so much and then bounces right back up again.

We are not going to get AFOs or DFOs (ankle or leg braces) at this time. Dr. Batley said that for braces to be beneficial for Elias we would have to brace all the way up to his hips. Bracing to that extent would do more harm than good to his mobility so we will hold off for now. She said that if his falling gets worse and he is injuring himself or needing stitches for falls, we will reconsider bracing at that time.

Dr. Bately held off on giving Elias an "official" diagnosis of spastic hemiplegia cerebral palsy at this visit. She said he has so many soft signs including the ones mentioned above and his aspiration of liquids, low mouth tone, and fine motor delay. We will see her again in January to reassess his progress but his treatment and therapy will not change regardless of diagnosis. He is still our amazing Elias who is a spunky, rambuncious, crazy three year old that runs us WILD every day.

September Slacker

Okay....so I've been an overachiever at slacking this past month. I cannot believe my last post was from August 20th. ACCKKK! Our world has been organized chaos in the past few weeks so I will give a few bullet points on each of us and after our vacation to TN next week, I will try to elaborate on the joys September brought our family.

Al -

• Spent a great month studying and spending time with the boys


• Wrapped up his 2nd semester with ANOTHER 4.0 GPA in his nursing program


• Started running more religiously again

Kellie (me!) -

• Working between 48-60 hours a week but absolutely loving my job


• Enjoying every free minute I spend with my boys and Al


• Finally went and had my hair cut after 9 long weeks

Carson -

• Started Kindergarten (wait until you see the pics...they are priceless)


• Doing amazing well and has the best teacher imaginable for Carson


• Has his ups and downs with his OCD/mania/ADHD/anxiety but the ups are outweighing the downs much more right now which is wonderful for him as well as us

Carson's 1st day of Kindergarten

Elias -

• Started his new preschool program and is getting used to a new environment/therapists


• Is growing TALL despite GERD and feeding issues flaring up (31.5lbs and 40.5" )


• Finally had his phys med apt that went fairly well with NO official CP diagnosis as of yet but they will re-examine in January (spastic hemiplegia - left sided) but overall good apt with more details in another post

Elias' 1st day of preschool (this year)

So.....those are just a teeny weeny glimpse into the things that have been going on in our household during the month of September. We've also had our usual couple of ED visits for respiratory distress, pneumonias, and overall crazy boy mishaps. Everyone is still running around like wild men so we aren't too concerned. The boys continue to astound us with their witty humor and never ended new skills. This is an age of wonderment and experiment and Al and I are loving every minute.

Camper Boy

While Elias and I were out on our special date Carson has been out at the campground with my parents having a fantastic time. Elias went out and joined them for one night since he still deals with some separation anxiety issues and gets very homesick and out of routine if he is not in his bed for more than one night. Carson has been living it up at Dillon Dam. Gigi and Bobpop have let him ride his scooter all over the campground chasing them and small woodland creatures. He has learned to play t-ball and is going to be our all star south paw. When not scootering (is that actually a verb?) around or knocking back home runs, the C-man has built some incredible construction sites with his diggers, cranes, and 18 wheelers. He is the embodiment of a boy and is eating up every spare minute of free time before Kindergarten starts on 8/28. What a huge milestone that will be.

The "Bee" Store

Elias and I went on a Mommy-Son date tonight. Carson is camping with my parents and Al was at class so we had some special one-on-one time. I asked him where the two of us should go to dinner and his reply was, "The bee store Mom!". When I looked at him quizzically he said, "You know, APPLEBEES!!!". I couldn't help but laugh. If you know Eli in person you know he is an incredibly enthusiastic kiddo that is full of expressions. His entire body speaks when he is talking, walking, or playing. Anyone around him knows his mood and intent right off the bat and this time he was completely conveying the "Mom, how could you NOT know the exact restaurant I was talking about when I said the bee store even though we never eat there and I called it by a completely different name" expression. Three years old is fun (and exhausting at the same time!).



So, the two of us headed off to the bee store for dinner. Elias toted along his new 18 wheeler truck from Target and his little Curious George monkey stuffed animal. He ordered a green grasshopper for his drink and grilled chicken with applesauce for dinner. Typical preschooler. I opted for the smaller portion of orange chicken and a diet coke. The various wall decorations thoroughly entertained us until dinner was served along with "honk-honks" accompanying his 18 wheeler play. He hardly ate due to his *$@#** GERD that has been driving him (and us) batty the past two months but a little extra tube fed Peptamen Jr. solved that tonight.




After dinner he wanted to head over to Barnes and Noble to look at books and play with the Thomas the Train sets. We had a blast and Elias was the only kid in the whole store. I found two drawing books to surprise the boys with for our trip to TN the first week of October. Eli didn't notice because he was too enthralled in the trains and then the cupcake decorating book he discovered. When he started yawning I scooped him up and we headed home for bath. Bathtime was a blast and Eli stayed in the bubbles until his fingers and toes were wrinkled up prunes. After getting dried off, new jammies on, and a bedtime story it was time for tube feeding, meds, and bed. Our date was wonderful and it was nice to have some individual time with Elias since Carson has gotten the last two special date nights.

Another ED visit

Elias was in the ED for yet another episode of respiratory distress last night. I came home after a 12 hour shift and he had been wheezing all day even on q4hr Albuterol treatments. He had a 100.4-101.2 degree fever on and off and was getting his characteristic retractions and nasty cough. Throughout dinner he coughed but remained stable but within 30-40 minutes after eating he was struggling to catch his breath so we headed back down to work to the ED.

They took us right back after hearing Elias hacking while coming through the automatic doors. Thankfully his sats weren't terrible on room air at 91-92% but that is not where a 3 year old child should be at resting. He earned x-rays, Decadron, and two more breathing treatments before I convinced the attending that I was capable of taking him home since this was probably the twentieth time we have dealt with the same situation. The attending agreed since aspiration pneumonia was ruled out and we were home before 1:30am. Good thing too.....I had another 12 hour shift starting at 6:45 that morning!

Mark one more compromise down for Eli's slowly healing BPD, asthmatic, chronic aspiration lungs. Caught up by age 2? Funny.

We Sprung a Leak!

For the first time in our entire MIC-Key button using history, Elias' button sprung a leak today!! He went to bed last night with it looking fine and this morning when he walked into our room his button was sticking out way too far. I tugged on it a bit and there was almost no resistance from the balloon inside his stomach. Carson was carefully watching our whole interaction as he is known to do so intently. I asked him to run downstairs and grab a 10ml syringe and a bottle of sterile water and bring it back upstairs. He was happy to help and was back within a few minutes with the right stuff. I checked the water level in Eli's balloon which should have been 5mls and there was only 0.5mls left!! No wonder his button was loose and about to fall out. There was nothing holding it inside his stomach.

Elias helped me take it out and fill it with 5mls of sterile water to check for any leaks. The balloon looked intact and the three of us couldn't find any water leaking from anywhere. Since we only have one spare button and one spare g-tube available at all times, the old button was going back in. I put 5mls of sterile water back in the balloon, checked placement, and that was that. When we came home from our day trip Eli's button was loose again and when I checked the balloon there was only 1ml of water left. Al grabbed the new button kit and we replaced as Elias calls it, "his old stinky button" with a "new shiny, clean button". So, Eli is the proud owner of a new 14Fr 1.7cm MIC-Key g-button which has already been used to feed him 1.5 cans of Peptamen Jr. since his GERD is driving him nuts and he isn't eating much right now.

Elias with no MIC-Key button


Elias with a new MIC-key button

This week has been fun from strep throat with him in the very beginning of the week (third time since the end of May) to questions about mitochondrial disorder again because they never received the official results of his muscle biopsy to knocking his teeth loose on Monday to needing a new referral to Physical Adaptive Medicine to get braces for his hypotonic cerebral palsy and falling all the time. It has been a hard week. But this smile makes each day brighter and his laughter is infectious. He is certainly one tough cookie.

Down on Young's Farm

Today the boys and I met one of my best friends at Young's Jersey Dairy Farm for some good food and fun. We hadn't seen Mandy for almost six months and we were well overdue for a visit. After the long drive and hearing Carson and Elias yell, "Honk! Honk!" at every 18 wheeler we passed on the freeway, we sat down to a scrumptious meal at the restaurant on the farm. I splurged and ordered a 1/2 slab of ribs and they were worth every messy bite. The boys both ate pancakes and couldn't stop looking at all of the John Deer tractor items displayed around the store. They were in heaven.



After stuffing ourselves we headed over to the animals. The boys wanted to pretend to drive the old tractors first so we bypassed the poor hungry goats for some farmer time. They had a blast. The farm has a little cow statue for kids to play on so Carson took on the role of bull rider and Elias soon followed. Eli then got scared and wanted down off the "stupid cow". Please remind me to thank Carson for teaching Elias that lovely word!



Finally we made it to the goats. The boys both received a dime each to buy food. They had fun putting it in the machine and getting out a handful of food. The goats (who were certainly not starving) gobbled up the food and then kept following the boys up and down the fence line looking for more handouts. Elias tried kissing them on the lips. Carson would run up to them, pet them on the head quickly, then run away even more quickly. It was cute. We had to visit the pigs, turkey, ducks, hens, and cows in the barn in addition to the overfed goats. Carson just repeated, "Mom, they don't smell too bad this time".



The day wrapped up with a trip to see Mandy's new house which was wonderful. Then off to her parents' farm to play on their playground. Carson and Elias begged Mandy for a ride on the Gator around the farm and to go see the piggies. Mandy happily obliged and we trekked our way around the fields having a fantastic ride. The pigs were excited to see us but mad that we didn't bring food along too. Unfortunately we had to leave to drive home and have nap time but the trip was perfect. The only thing missing was Al (he was at clinical for the day).


(no, Carson didn't get to actually drive the Gator)

Thank You Godiva

Today was my day off. I wanted a quiet, relaxing, fun-filled day with my three boys. Sometimes we don't get what we want.

The morning started out with Carson and Elias waking up wired. If I hadn't known any better I would have sworn they had stolen some of Al and my Starbucks Espresso Roast. During one of their more than rambuncious wrestling matching in the family room, Elias accidentally nailed his teeth into the top of Carson's head. This in turn knocked his left front and side tooth loose producing lots of blood. Carson also started screaming like he was dying even though there was hardly a bump on his head. Elias sat there, looked at me, and said, "Mommy, there is blood on my face. Can you get a towel?". I guess not feeling pain normally has it's moments.

Off we go to the dentist to be told that there is nothing they can do since they are baby teeth. We are to watch them for abscesses and drainage around the gum line and bring him back in if either occur. The teeth might loose color and die if there was nerve damage but since they are baby teeth they won't do anything to save them. Eli's mouth is a bit swollen and bruised but he's happy about the soft diet for a few days.

The boys continued to be wild and crazy (as most 3 and 5 year old boys are) so we tried to distract them with a trip to the store to pick up craft supplies for later. They found many treasures and I can't wait to start creating with them. Pictures of their masterpieces will follow in the coming weeks....

Al left for school around 5 and I swear that demons possessed my children. I could not get them to sit still or listen for anything. Playing outside didn't wear them out. Distractions weren't working. Time outs were laughable. It was "penis head" this and "booger butt" that, followed by boat loads of unstoppable laughter and running in circles. I was at my wits end when The Tigger Movie and some snacks finally saved the day.




Once the munchkins were f-i-n-a-l-l-y worn out, exhausted, droopy eyed, and in jammies, I tucked them in and kissed them goodnight. Then my defeated mommy self walked downstairs and cracked open my savior -- a brand new clearance box of Godiva truffles. I needed a perfect treat to end an imperfect day. And what a treat it was. Thankfully I only ate one truffle and carted the remaining 35 decadent pieces off to work in the morning so 18 nurses could divulge in Godiva calories with me. :)

Titletown, USA

It's about that time again....BUCKEYE FOOTBALL season!! ESPN has a short segment at the end of July looking for THE town in America that is deserving of being named Titletown, USA. The segment was all about The best city and our hometown heroes, The Ohio State Buckeyes!! We bleed scarlet and grey here and can't wait for the season to start. Check out the clip...

Titletown USA clip

The Ohio State Fair

Today was opening day at the fair and I just happened to have a day off. We packed up the boys and headed out of the house looking for some good ol' fashioned fun. I had a dermatology appointment in the morning and unfortunately it took a little bit longer than expected due to them needing to biopsy a place on my left arm. The boys were FULL of energy the time I was done being sliced, diced, and stitched up. We pulled into the fair and you would have thought the boys were in heaven. They couldn't figure out what they wanted to do first. Thankfully Daddy was there to direct us towards the Budweiser Clydesdale horses. Carson and Elias loved looking at them (so did mommy). They were beautiful and gigantic.



Next up was the sheep showing arena where poor Carson almost threw up due to his sensitivity to smells. Elias on the other hand was trying to pet and kiss every sheep we passed. He said they were "nice sheepies". The craft area was next door to the sheep area so we made a quick run through the shops. The BMV had a drunk driving display and seat belt demonstration. Carson was very interested in seeing the car that was completely totaled and then hearing that the state trooper driving the car that was hit, lived because of his seat belt use. He kept reminding Al and I that we should "always, always wear our belts because that is the SAFEST thing to do". My little safety boy.



We finally made it over to the agriculture barn and the boys were able to pet baby chicks and ducks, see soy bean crops, puppies, and ride little John Deer tractor tricycles. They had so much fun in this building. There was a giant play train set up here and the boys just watched and watched it go around forever. It may have been the highlight of the day.



We ended the fair with a stop by the dairy barn for cheese sandwiches and chocolate milk just like I had as a kid. Carson gobbled his up and asked for seconds while Elias picked at his and finally ate just the cheese with no bread. I treated myself to a funnel cake on the way out and the boys nibbled around the edges too. The fair was a lot of fun and Carson and Elias both were worn out by the time we walked back to the car.

Touch-A-Truck 2008

Today was our town's annual Touch-A-Truck Day for kids of all ages (well, okay...it's really just for the little kids). The boys have been waiting all week to go and could barely wait until 10am this morning to get there. Enjoy the slideshow of pictures from our adventure. Carson and Elias had a fantastic time and I think it even trumped last year.

Make an on-line slideshow at www.OneTrueMedia.com

Camping Preview

We've been busy with fireworks, camping trips, and summer life in general. Here's a quick preview of some of our fun until I can get a proper post put up. I hope everyone is enjoying their July like we are!

Adoration

Just look at how Elias is smiling at Carson in this picture.



You can just tell how much he idolizes his big brother and wants to be just like him. It's great to finally see the boys playing with each other and getting along (for the most part). I think three and five are going to be a lot of fun, excitement, and learning for all of us.

Elementary School and Assessment Results

Today Al and I had a meeting to go over the results of Carson's comprehensive developmental assessment that was completed throughout the month of May. This program was fantastic and very thorough, covering all aspects of Carson's life: social, behavioral, intellectual, medical, psychological, and adaptive. They tested him from one end to the other as well as interviewing us, gathering data from his teachers and doctors/psychiatrists, and observation. Carson did splendidly during the hours and hours of exams and even told his pediatrician on Monday that the tests were "fun and like playing". Al and I were relieved to to hear him voice those feelings because most kids would be bored to tears with the academic hoops they had Carson jumping through for four days.

Overall we weren't shocked by anything the assessment found. They are not going to change any of the diagnoses he currently has in his medical record because the assessment confirms each one of them. He will still be listed with anxiety, ADHD, mania, and OCD. The only label they feel could possibly change in the future out of these 4 would be the ADHD due to overlapping symptoms from the anxiety and OCD causing ADHD-like behaviors at a young age.

The IQ testing only gave official proof for all of us that Carson is one bright little man. Most people who know Carson could have told you that years ago but it is always wonderful to hear professionals praising your child's intelligence. He excelled in pre-academic, academic, and verbal areas over all others and his lowest area was non-verbal communication which was also not a huge surprise. They found that Carson should definitely be in kindergarten this year and not in a third year at his special needs preschool program. He mastered all the pre-academic skills and almost every one of the kindergarten skills. The psychologist felt that Carson's behavior would spiral downhill if left in preschool again due to severe boredom. Their recommendation is a typical (YAY!) kindergarten classroom for this year. They want a specially modified IEP with a custom fit behavior plan incorporated into the schedule that is followed strictly. An aide for classroom redirection when Carson's anxiety and OCD kicks into overdrive will also be instituted into the IEP recommendations (hopefully the school will provide since the multi-factored evaluation has found it medically and psychologically necessary). A new speech evaluation will also be requested due to Carson's problems with pronunciation and articulation. They feel that since his vocabulary is very advanced, he is verbalizing complex words and gets frustrated when the sounds don't come out quite right. Hopefully some speech therapy will be instituted this year at school.

Carson is overjoyed to be going to kindergarten this year!! We came home and told him the great news and he was grinning from ear to ear. He couldn't wait to call his grandparents and tell them about becoming a big, grown-up kid. Al and I loved seeing him excited over education and such a large step in life. What a unique and special kiddo we are blessed to have.

The team also is doing a direct referral to a great psychiatrist here that works with behavioral therapy. He will work one-on-one with Carson and with us as a family to develop a plan to direct Carson's OCD and anxiety compulsions through behavior modification. He will help Carson learn how to redirect his energy and try to break the chain of OCD when he is *stuck* in a cycle. They will also give us tools to work with when he gets into a manic phase to help bring order and calmness back into view. This therapy is not a quick fix and will take a lot of hard work for Carson and for our family but this doctor is well known for his work. The team knows that Carson's intelligence and verbal skills will help him learn and utilize the behavioral therapy at a younger age because he is able to verbalize his feelings and thoughts more than most 5/6/7 year olds. We can't wait to get started.

Al and I won't have the official written report from all of the testing for a couple of weeks but the whole experience has been more than beneficial for Carson and our family. The assessment didn't really give us a lot of additional information on top of what we already knew about Carson based on observation and current diagnoses. However, the plans and connections we've made on top of the confidence Carson, as well as Al and I as parents, gained was more than worth the time and effort. Time to go hug our bright, sweet, KINDERGARTNER!!! (and then battle the school district for all of the new IEP conditions and the aide!)

Last week of June through the years

I thought it would be fun to see pictures of the boys as they have grown up and since it just happens to be the last week of June.....I picked pics from that very week of each year. Genius, I know. It was so much fun browsing through our archives and watching Carson and Elias grow from teeny weeny neonates into the crazy, rambuncious five and three year olds that they are today. Enjoy the trip down memory lane.

Carson at 2 weeks, 1 year, 2 years, 3 years, 4 years, and 5 years all in the last week of June.

Elias at 2 weeks, 1 year, 2 years, and 3 years in the last week of June.

Birthday Peek

Just a quick update and a few pics before I head to bed. Happy Birthday to our two amazing boys!!! Five years ago Carson arrived at 30 weeks gestation at 11:47 am. Three years ago Elias arrived at 25 weeks gestation by emergency c-section under general anesthesia at 1:48 pm. They are exactly 2 year, 2 hours, and 1 minute apart. And look at them now!!

Happy 5th Birthday Carson!!!

Happy 3rd Birthday Elias!!!

I can't believe they are growing up so fast. They both have strep throat today but we had a great day together anyway. I have TONS and TONS to update on. IEPs, developmental assessments, ER visits, two birthday parties, new height/weight stats, end of school wrap ups, and a vacation to TN. But for tonight I am going to leave you with a few sneak peeks of the birthday madness.

I promise I will get to the updating once the strep throat and doctor appointments settle down. Plus I have so many pictures to share that I'm busting at the seams to get them out to everyone!