Needing a break

The last few days have been quite hectic.....Daddy had to travel for work so Mommy was in charge (well what's new).  Today I got to go with Mommy to take Aidan to Kindergarten.  So many Mommies came up to see me to how I was doing.  Then Mommy and I went to pick Marmee up at the airport.  She bought me a new toy and I LOVED it.  Mommy was so excited it was the best response to a toy I have ever had.  I was trying so hard to reach my new toy....I won't let anyone take video of me because it would rather look at the camera then perform. 

After playing I was so excited to see that my new sunglasses had come in the mail.  Now I can go outside when the weather cools down.

After sporting my new glasses, which I HATE having on, (but will have to deal with it according to Mommy) we went outside and watched Aidan run and jump while Mommy took pictures of all his COOL moves.....

After several busy days Mommy decided to let Aunt Destin try typing the blog for me for so that Mommy can have a break.....Mommy says people should not get use to that since Aunt Destin is a better "interpreter." 

Again Sunday was way to hot for me to get out of the house.  Mommy and Aidan rode bikes to the Farmer's Market while I stayed home with Daddy and then Grandma came over with Brunch to celebrate Daddy's birthday.  I was so tired that I slept through the entire celebration.  Poor Aidan.....he's trying so hard but is having such a difficult time not being able to get out in the heat as a family.  He is trying really hard to understand.  I ended up staying home with Aunt D *I was having a hard time) while Mommy, Daddy, and Aidan went to his best friends house for dinner.  Aidan is so happy to be with his best bud...... we love Grady!!!!

Today was an interesting day.  I woke at 3 am and decided to stay awake until 10 am.  I went to the Anchor center for my vision therapy but only lasted about 20 minutes.  I like working on my vision but the noise really gets to me.  After spending 30 minutes in the cuddle swing we went home and I slept for another 5 hours and once again decided to not eat.  No food since 3am. 

Well I still have my "Chunk" according to Daddy so all is good.

 I spent the afternoon with Grandma while Aidan was on a play date with Gretta after school (thanks Peggy)......

and then got to spend quality time with Daddy when he got home.

Too Hot

The heat is really getting to me.  Since the medications I'm on keep me from sweating I get overheated extremely fast.....well that makes it very difficult for me to leave the house.  Another day inside and my poor brother is going crazy.  He has been so patient today since Mommy left with Aunt Destin and was Daddy in charge.  As my head control gets better I can now spend time in my swing.  What a treat to get to sit up more and check out my surroundings.  Mommy has me all wrapped up in the Shawl that Ms. Pat sent from her church.  She and her daughter Jenny sent me such nice gifts.  Thank you so much.

Mommy and Daddy are heading out the door for Daddy's Birthday dinner.  Aunt Destin is in charge.....everyone watch out!!!!  Well she already got me fed and asleep before Mommy and Daddy left.  Aunt Destin you rock!!!.

Today we had 2 important appts.  The first was with Genetics/Metabolics to see if they have been able to come up with a direction that will lead to a diagnosis.  As expected they are STUMPED!!!!  They found one mitochondrial and 2 single cell abnormalities.  Basically they can only tell us this and that is it.  They are not advanced enough in their interpretations to know what any of this means.  So where does that leave us?  It leaves us where we were, preparing for the worst but hoping for the best.  Mommy and I are happier without a diagnosis as the majority of the areas I fall into we don't like......so we find our peace and hopefulness in the not knowing and focusing on my progress.  Progress you say......yes.  Check out my head control....

Even my pediatrician Dr S said I looked better that she had expected.  So my goal from now on is to show the doctors each time that I can and will be better than expected.  Dr S told Mommy and Daddy that they should stop comparing me to someone my age but rather focus on my "new" birthday.....the day my seizures/electrographic spasms stopped.  I have been seizure free since approx June 17th.

After getting home form a day filled with doctor's appts I wanted to hangout with Aidan.  Mommy got me a "tent" so I can hangout with them outside and stay cool/warm and not get bit by bugs and I can use this to stay at Uncle Widg's and Aunt Destin's house.

Oh and for an early birthday present for Daddy (his birthday is tomorrow) I pooped all over him this evening......I love you Daddy and hope tomorrow you have a Happy Birthday.

Calm before the storm

Yes I'm awake watching Cisco

Alright here we go.  So yesterday was a great day......I worked hard and everyone was so excited.  Well today is a different day.  I'm not really sure why, but here it is....  It all started at 3am, I woke up, ate and stayed awake, with the exception of 3 hours.  I have been awake since 3am this morning except for 3 hours.....and according to Mommy the awake hours have NOT been fun.  I have been inconsolable.  I'm so tired but for some reason cannot fall asleep longer that 30 minutes.  Mommy has tried EVERYTHING to help me sleep, rocking, bouncing, walking, snuggling, singing, in the car seat (which I hate), in the carrier, on the boppy, in the cradle, etc.  You get the picture.  Even, Cisco, our crazy dog was tired of watching me fight sleep.

Is it med related, who knows.......but sleep must come!!!!

Tomorrow is a big day.  First thing in the morning we have our big appt with Metabolic.  We are not sure what to expect but feel it will be a lot of.......be thankful you don't have this, but we are not sure if you have this......and in the end they will not be able to tell us what I have.  So Mommy and Daddy are searching for the hope in that......that they don't know what is wrong.  That I don't have certain things.

Mommy on a 9:30 walk with me which DID NOT PUT ME TO SLEEP!!!!

Working it hard

Since I decided to sleep through OT twice last week Mommy was on her game today and after she took Aidan to school made sure I got plenty of sleep before OT.  When Ms. Julie came today she couldn't stop saying how good I looked since she had not seen me in a week.  I decided to show off and really used my hands.....grabbing at toys and even bringing them to my mouth.  This was a big deal and she was really impressed by all my tricks today. 

After OT Mommy was successful at getting me down for another long nap before Ms. Beth came for PT.  Well I have to say I pulled tricks out of my hat for her as well and even let Mommy get video of me holding a toy and putting it to my mouth.  You might not realize it but this is a huge milestone for me.....one that some of the doctors said I might not achieve.  I think after our meeting with them last week The Johnson's are more motivated than ever to prove them wrong.

Apparently while I was sleeping this morning Mommy played dress up with me and put me in an outfit that Priscilla, Aunt Destin's friend gave me.  So her it is......

Sunday/Monday

Yesterday I spent the morning with Daddy while Mommy and Aidan went to the Farmer's Market.  I was awake for 8 hours straight which I have not done before.  I don't think they knew what to do with me.  Later that afternoon Mommy's friend Ann came to visit and snuggled with me while Mommy and Daddy dealt with Aidan after he hurt himself.

After things calmed down Aidan and I played outside on the patio while everyone ate dinner.

Today I went to vision class and spend 20 minutes in the Light Room.  Ms. JC said it took me 10 minutes to start doing what many infants take months to do.  Wow that motivated Mommy and I.  So with the help of Ms. P Mommy was able to create a Light Room at home and I will be able to do some light therapy at home.

I gave Grandma a run for her money today.  She kept saying I have a temper......whatever that means.  I was tired and hungry at the same time so I'm not sure what's wrong with that.  When Daddy got home he was able to get me to sleep......but a little to early for Mommy's liking......something about me waking up at 4am if I fall asleep to early. 

Spring Cleaning

Well really it's Summer cleaning.  Mommy and Daddy decided to catch up on cleaning since they were in the NICU with me and missed their regular cleaning.  I slept most of the morning and then Mommy brought me out in the garage while she cleaned.  Between people stopping by to chat, the music, my brother checking up on me, and the heat I became overwhelmed and needed to be taken in for a nap.  We are hoping that after I'm off the Topamax my inability to sweat will stop and I will be able to regulate my body temp.  After my long afternoon nap I spent to evening out on the patio with Mommy watching Aidan and Daddy play baseball.  Aidan kept asking to have his picture taken with me so Mommy went crazy with the camera.

Reaching out

Mommy took me to my Chiropractic appt, Grandma stayed with me while Mommy took Aidan out for the afternoon, and I'm having a cranky evening.  I did reach out are grab one of my toys while sitting in my bouncy chair......YEAH!!!!!  Aidan was running around the house announcing this and informing everyone he that this is his doing and he is a great teacher.  While I love my big "Bubby" I did do this all on my own. 

 

Over the past several days I have been much more active.  We are cautiously optimistic since many of my movements are spastic in nature.  We did get a taper schedule on the medications that we feel are not working.  I'm 3 weeks into my 6 week taper off of Phenabaratol and after that will start my 6 week taper off of Topamax.  Dr. L doesn't want to take me off the Keppra even though we know it is not working, but if I know Mommy and Daddy they will get their way and get me off of it.  So if I remain seizure free I should be off all my meds before Christmas.  Mommy told me that would be a wonderful gift for her since she does all my meds at this point.  So we will find out since I have a maintenance EEG in 4 weeks.  Dr. K was kind enough to inform my parent that she treats another kiddo who was looking great and when they did her maintenance EEG she was in fact worse.  We were not sure how to take that info at first but have decided that is not going to be the case with me.  

We are so thankful for all the gifts, notes, and messages people have been sending.  Aidan and I loved the care package sent by Don and Cindy (you can see Aidan working hard on coloring me a picture).   Mommy's work was so wonderful to provided us with more meals which with Aidan in school and coming home earlier now it is so helpful.  It gives Mommy and Daddy more time to spend with Aidan and I.  Mommy reads me all the thoughtful emails and cards she has been receiving. They are a wonderful inspiration and only make me want to work harder to prove the doctors wrong.  Thank you to everyone for being so supportive and thoughtful.  Our family is truly blessed!!

Dr. Do-Little

WOW what a day.  We started early as Aidan had is first day of Kindergarten and woke up early and ready to roll.  I stayed home with Daddy while Mommy and Aidan headed off to school to meet his Teacher Mrs. M and his new classmates. 

I hung out at home with Mommy till Beth came over for PT.  I did really good on all my exercises but was not willing to do tummy time today.

After PT Mommy, Aunt Destin and I met Daddy at the hospital for my big appt with my Neurologist (Dr. K) and Epileptologist (Dr. L).  After waiting for over an hour we headed into our meeting.  My family had pages of questions for the doctors and printouts of studies they have read and researched.  We initially met with Dr. K.  I guess she became so overwhelmed with the intensity of my family that she left the room and another doctor returned in her place.  Now we were meeting with Dr. L.  As per several phone calls my family has had with him over the past few months he is not wanting to move in a direction that Mommy and Daddy would like.  My situation is so complicated that Dr L could only described it by saying to Mommy and Daddy, "The two of you are in as bad of a position, just short of losing a child."  He was trying to tell them that he empathized with their feelings of hopelessness in trying to understand my situation and lack of treatment options.  The very long of the short is that they have NO clue what is wrong with me.  I have been again put under the umbrella of neonatal encephalopathy (don't look it up - it is not good and very depressing).  Nobody seems to agree on what I have had, meaning some docs think I have infantile spasms while others says electrographic spasms.  I did at some point have hypsarrhythmia, but that and my seizures seemed to have stopped with the ACTH.  Some good news was that we were told that the majority of children whose seizures stop with ACTH tend to stay seizure free for good.  We are praying I fall into that boat.

The stand off began when the doc basically told Mommy and Daddy there was nothing more they could do since I am seizure free.  Keep in mind that there is something going on in my brain (the chances are that they will never find out what it is or if they do it is most likely not treatable) that is causing an "abnormal noise" on my EEG and therein lies the problem.  We have an appt with Metabolic next week.  My fate lies in their hands to hopefully discover what the underlying cause is and we pray that it is treatable.  Even though we left knowing that I am doing significantly better than they could have ever predicted we are still feeling defeated by not being allow to find more treatment options.  Mommy and Daddy are asking for yet another consult and are following up on some leads in Canada.  Please keep me in your prayers....even though things are not as good as my parents would like I am beating the odds at this point.

Nezbah

Waiting for the doctor, and waiting, and waiting.....

Much going on.....

I had a difficult night last night.  We can't seem to figure out what is going on.....We are guessing it is related to my tummy issues, but no one seems to have an answer.  Over the past few days I have been showing some concerning movements and we are not sure if it is related to my inability to process info (auditory, visual, tactile) or more spastic in nature (not good).

I went to the Anchor Center with Mommy and Aunt Destin to for my vision classes.  I stated off in one room and struggled with the amount of noise (many kids talking and making commotions).  In the next room the therapist introduced me to the Cuddle Swing.  WOW......that was great.  It was like having a giant hug.  It seemed to make it easier to handle the stressors around me and I was able to nap and recover from the previous room.  Then on to the light room.  I think I would have enjoyed it more but there was another child who was older and kept encroaching on my space.......I was not a fan of that and had Mommy take me home.  I think I will give this place another try next week.

In my cuddle swing

Better view

  After my vision classes I went home and took a nap with Aunt Destin and once again decided to sleep through OT.  Mommy was not so happy.  I'm 2 for 2 this week with my therapist and Mommy told me I needed to step it up for PT tomorrow or she will not be happy.  I'll think about it.

I finally woke up last this afternoon with all the commotion in the house.  Apparently my big brother is starting Kindergarten tomorrow and there was much preparation.  I'm very proud of him.  What a great role model.  Tomorrow Mommy and Daddy meet with my treatment team to discuss further treatment options.  We will see how that goes!!!!

The beginning of a long 2 weeks...

Today started off much as yesterday did.  I was completely off any type of schedule and not eating well.  Then things seemed to improve.  Mommy took me to my Chiropractic appt and Dr. Kaitlin re-scanned me and is seeing much improvement in most of my areas (except my eyes and bowels....go figure).  Afterwards I decided to sleep all morning and most of the afternoon.  Ms. Julie came by for OT today, but decided to blow her off and slept thru OT.  Well she called my bluff and is coming back tomorrow.  Well I guess I better have my A game on then.  Right after she left I woke up and Mommy's friend Kate stopped by for at surprise visit.  Mommy was very happy.

Grandma came over to watch me so Mommy could spend some time with Aidan this afternoon.  When Aidan returned home he was so excited to see that he got a cool gift from Cousin Mimi.  He and Daddy spend the evening putting together his circuits.  Thanks Mimi.....when Aidan is happy we are all happy.

One of the recommendations of the Anchor yesterday was strap bright toys to my wrists to encourage me to "find" my hands.  Well Mommy decided on colorful hair bands.  So here I am sporting my stuff......not very fashionable but we will see if it does the trick.  I go back to the Anchor Center tomorrow with Mommy and Aunt Destin and will start to prepare for my big Neurology appt on Thursday.  My family has been really concerned about my ability to go....well you know without some assistance.  We decided to add this to the long list of questions and concerns we have for the doctors at my many upcoming appts.

Long day

It was a difficult start to my day.  After Mommy and I dropped Aidan off at Camp we headed over to the Anchor Center to see if I could finish my vision testing since I became so overstimulated last time they didn't get a chance to finish.  During the eye exam I became so out of sorts and overwhelmed that Mommy had to leave early to get me home.  I think I was trying to tell her I was having painful tummy problems this morning and that the vision test was more than I can handle.  The initial findings with the vision test are pointing in the direction of Cortical Visual Impairment (CVI).  I will have another vision test in September or October to make a definite diagnosis.  I will go to the Anchor Center twice a week and Mommy will learn techniques she can try to help me try and build up my visual processes.

"CVI is a temporary or permanent visual impairment caused by the disturbance of the posterior visual and/or occipital lobes of the brain.  The degree of vision impairment can range from severe visual impairment to total blindness.  The degree of neurological damage and visual impairment depends upon the time of onset, as well as the location and intensity of the insult.  It is a condition that indicated that the visual systems of the brain do not consistently understand or interpret what the eyes see."

After coming home I slept all day and decided to not eat as it was to taxing for me.  My family is now discussing what their plan of attack will be on Thursday when we meet with the Neurologist.  I'm down for the count tonight but am planning on having a better day tomorrow for the Chiropractor and OT.  

Uncle Widg and Aunt Destin are here tonight and I am now with Aunt Destin which my family calls entering "the force field of love".  I have the best Aunt's and Uncle's ever!!!!!

Meeting new people

So today started out easy.  I got to hang out with Daddy while Mommy and Aidan went to the Farmer's Market and then went on a 5 mile bike ride.  Daddy and I did my exercises and then he let me take a long nap. 

After my nap I went to Aidan's school for his Ice Cream Social to see who his teacher for Kindergarten teacher is going to be.  It was my first real social outing with many people.  There were so many people waiting to see me; it felt so good to be loved and cared for by so many.  I love seeing all those who are thinking about me, but now I'm tired.  To the rescue comes Aunt Destin to snuggle with me tonight.

Calm day

So today was PJ day.  We decided to stay in our jammies most of the day.  I continue to have tummy trouble which seems to come and go.  Today was not so good and I skipped most of my feedings until this evening.  I spent the evening out on the patio with my family after everything cooled down.

I had plenty of snuggle time with my brother. 

 

.... hung out while everyone ate dinner.

Hard at work

So after working so hard at PT yesterday Mommy decided to take me to her work today.  Boy what a crew!!!!  I got so much lovin, it was great.  Mommy was so excited to be out of the house doing something non-med related that we stayed for lunch and then decided to stay for the afternoon.  I was so worn out after my chiropractor appt and meeting Mommy's co-workers that I slept ALL afternoon.  Even slept on Mommy's desk for awhile.

It was a nice day and I got to meet so many new people. 

 Everyone says they read my blog and are so happy that I am doing so well.  It was a Geaux Team Harper day!!!!!

A great day

OK now that I'm starting to get the hang of this lifting my head thing I'm being told that I am going to have to work really hard on my vision.  Mommy and Daddy got my Function Vision Assessment today and it seems that I have a lot of work to do in this area.  My hearing seems to be my main source of learning right now.  It's easy to tell since I'm always following my Mommy's voice.  Now I have to start following toys and faces.  Wow......I'm going to be doing more school work than my brother who will be starting Kindergarten.  I better show him how this homework stuff is done.  I had a great PT session today.....

 Grandma came to help and I got some good snuggle time with her.....

It's so hard looking this good.  I got my picture posted by the CEO of Aden and Anais (the swaddle blanket people) on their Facebook page today.  One person even wanted to know if I was David and Victoria Beckham's child. 

Aden and Anais Facebook Picture - Click Here

I got the hint

Alright I finally got the hint.  After weeks of OT and PT I decided to show Mommy what I really could do.  So during tummy time I worked my hardest and lifted my head.  I think I surprised Mommy so much that she turned the video on after she stopped crying.  I AM doing awesome and my head control only improved through out the evening.

After all that hard work I decided I would go to sleep and snuggle with Mommy and Aidan. (Daddy had to work late tonight).  I have PT tomorrow so I'm hoping I'm in the mood to show Ms. Beth what I can do.

Pooped out...

Still recovering from the past few days.  Mommy called Dr. S to see if she needed to be concerned about my recent lack of eating and not pooping and increase in sleeping.  I basically stopped eating for almost 24 hours (barely eating in 24 hours what I usually eat in one feeding).  I was still refusing my meds and having to have the injected into my mouth.  After much discussion with Dr. S and Mommy I decided to show them my issues.....it seems that I (as I always do) went from one extreme to the other.  I went from having diarrhea to being constipated (something Mommy has yet to deal with).  After Mommy spent most of the morning working on my tummy while I slept and a glycerin suppositorieI worked my "issues out".  I'm pretty sure I scared Uncle Widg and he will not be holding me for some time after this.  Now it is a whole new ball game and I started eating every 2-3 hours to make up for lost time.  I guess I just needed to make more room.

Ms. Julie came by today for OT.  My head control has not been progressing as well as it had been.  I guess that what happens when you sleep most of the time.  So to show me that they mean business Mommy and Ms. Julie increased my PT to twice a week.  My schedule is going to be crazy starting next week.  Mommy was also able to get me twice a week covered classes at the Anchor Center to help me to continue to work on my vision and tracking concerns.  So between PT twice a week, vision twice a week, OT once a week, and Chiropractic up to three times a week I am going to have Mommy going all over the place.  Mommy, Grandma and Aunt Destin have come up with a plan to make sure someone is me in the afternoons while Mommy will be getting Aidan from school and helping him get settled in in the evenings.  I'm excited since that means I will have all kinds of snuggle time with them.

Aunt Destin and Uncle Widg are here as usual on a Tuesday nights and I'm headed to the basement to spend time with them so Mommy and Daddy can get some sleep.