Despite her struggles ....

...in her short life Ella is always happy! And she is always eager to make you laugh! This girl is going to be a comedian someday! 

This was taken this morning. She insisted I take a picture of her pretty blue and pink hair lol. 

Remember the low muscle tone?

Well I promised I would come back to it and here is where I do that....

Ella has always fallen down a lot.  She constantly has bruises all over her body.  I often joke that someday her pediatrician will all OCY on us because of them, but the fact of the matter is this girl is clumsy!  She falls down all the time.  Whats more is that these falls do not phase her in the least.  You see Ella does not feel pain.  At her Shriners appointment last week her BCM was with us and witnessed this first hand.  She saw Ella fall off of a chair and hit the ground head first. The normal child would have screamed from the get go.  Not Ella...she laughed like you were telling a joke.  Then she looked at me and saw my reaction because to be honest she hit her head HARD!  That is when she started fake crying.  

When she was 4 she had an EMG done.  This test was painful for everyone I have talked to including her dad.  When Ella had the pads placed on her and shocked she did not cry.  When they placed the needle in her and shocked her she was fine.  When the tech took the needle out Ella saw the tiny pin drop of blood and this is when she freaked out!  

This has a point I promise....Ella was evaluated for OT  services because of her apraxia and her falling down ALLTHEFREAKINGTIME!!!  It was determined this week that Ella will get OT once a week at the Achievement Center.  They will be treating her for sensory processing disorder.  For those unaware three symptoms of SPD are falling down a lot, low muscle tone, and not feeling pain.  All of which Ella has.  With any luck the OT can help her with her coordination and help her strengthen her muscles.  That is the goal at least!! 

She has a what?

Here is basically the same post I posted to fb just to have it documented here.....

Ella has multiple osteochondromis. It is the same bone disorder that her daddy, Darrell has. A disorder that he was told would never be able to be passed on to his kids. A year ago this past August we thought this might be a possibility because she wasn't walking at daycare well and when taken to the ER we found one tumor. We were told it is quite common to have one tumor but it wasn't worrisome and come back if it seems to bother her. Fast forward to her 5 year check up. She only grew a 1/4 of an inch. They like to see at least 2 inches of growth a year. So her dr ordered an age scan on her and a referral to shriners. The age scan showed that she is fine in that respect but she had what we were told was 'an old injury'. Today at Shriners we told all this to them and they decided to do some X-rays including of her wrist. They x-rayed both of her legs and her left wrist. She has a total of 5 tumors on her legs when a little over a year ago she only had 1. There is no doubt in this drs mind that she has the same bone disorder as her dr. This is similar to cancer. They are tumors but they will never spread altho the tumors can and most likely will grow they will never spread and will never be a concern like that for her and although there is a small chance that the tumors will turn into cancer the risk is small.

The concern for her at this point is pain. How much pain will this put her in? Well those that know Ella know that she doesn't feel pain. A year ago she had an EMG. When they put the probes on her to shock her muscles she didn't flinch. When they put the needle in to shock her, again she did not feel pain. When they took the needle out she freaked out about the pin drop of blood on her leg. We always thought this was a curse. Today after getting this diagnosis I think her not feeling pain is a blessing! This bone disorder causes her dad insurmountable pain. Perhaps we can spare her that much! She will need surgery. When we do not know. We just know that with this disorder comes surgery. A lot of surgery. Usually when they get to be bothersome. The tricky party with her is we are unsure how we will know when she is at the point that she cannot handle it any longer. This is something we need to address.

In addition to all this when they did the X-rays the tumors look like shadows next to the bone. This is what was looking like an old injury. The dr at shriners said it is absolutely not an old injury. The X-ray of her wrist is white and looks to be actual cancer not a tumor.

The next step is a second opinion from Darrell's ortho dr who we trust with our life on January 3. After that we will determine what the next step will be. If it is cancer on her wrist the next step will most likely be Pittsburgh to talk to their oncology department. If it is not cancer we will just try to figure out a game plan for knowing when these tumors should be removed.

She's litte, she's cute. She's strong....she is a fighter!!! Here's to hoping she can pull her resources to fight this with everything she has!!! Please pray if thats your thing, or positive thoughts...whatever it is that you do so we can figure out a game plan and do whats best for her!

Expressive Language disorder, Apraxia and PPD-NOS and so much more....

We knew from an early age that Ella was going to be behind in many areas.  Speech was a huge area for her that required much attention.  She was diagnosed with severe expressive language disorder and apraxia.

Aprax-a-what??

Apraxia was described to me as this....its like a drummer who is messing around on the drums.  When he plays something he really likes he goes back and tries to duplicate it...but cannot!  This is how apraxia is for Ella.  She can sometimes pop off with a word here and there but when she tries to duplicate that word she struggles.  hard core!

Fast forward to Summer of 2012.  I was working in a camp for children who are high functioning on the autism spectrum.  I grew to realize that Ella was a lot like the other kids.  Ella would line toys up, freak if you disturbed her lines, hated not being a routine...etc.  I decided to have her tested to see if she was on the spectrum as well.  Her ADOS testing came back borderline.  The testing was also done at 8am.  Because I was working the camp I talked to the director of the program and he suggested having her seen by a specific psychologist at the Achievement Center.  When we saw this woman it was in the evening and Ella showed a lot more 'autistic tendencies' that we see her do at home.  She was color coordinating things, lining things up, becoming agitated if the routine was disrupted.  She gave her a diagnosis of PDD-NOS - provisional.  Meaning she would have the diagnosis but she wanted to see 6 months of data to support the PDD then she would take the provisional off.  The problem with this is the insurance wouldn't approve a BSC to get the data with the provisional on and the psychologist wouldn't take the provisional off without the data.

It was then that we sought out another psychologist who did more testing on her and determined that she did in fact have PDD-NOS and even gave her the diagnosis without the provisional on it to ensure that she gets the help that she needed.  At that time her BSC noticed that Ella wasn't even trying to say words even if we knew she COULD say them.  A lot of this was self conscious issue.  In the last year Ella has went from saying nothing to saying many things and even saying short phrases such as yesterday when she said 'whoa mama big!" referring to the snow mounds outside of her prek.



This basically concludes the 'background' information on Ella to get you caught up on her history.  This is just an overview.  I am sure there are other things that have gone one medically that have slipped my mind but these are the basics....if you have any questions feel free to ask :)

The weight roller coaster

Once Ella was released from the NICU she did mostly well.  She had an instance of reflux that was tough for her to experience and us to watch because it caused to arch her back in pain.  In addition her eyes rolled in the back of her head and to be honest it looked as though she was having a seizure. At 4 months old we switched pediatricians and he put her on special milk and placed her on prevacid for her reflux.  This seemed to fix the problem.  For the next several months she gained weight and grew according to her growth curve.  At her 9 month check up she was 21 lbs.  This would be the last time we saw her at this weight until she was 3.5.

At her 12 month check up she was down to 18 lbs. We went back 2 weeks later for a weight check and she was down even more to 17.5 lbs.  This was the beginning of a long battle to determine why she was not growing.  At this point she was now diagnosed with failure to thrive (aka FTT).

We saw specialist after specialist.   Every visit I would cry and just please with them to fix my baby.  She was literally wasting away to nothing before our very eyes.  Some days I felt like a maunchausen by proxy mom.  I have no clue how many times I cried for them to just 'fix my daughter'.  Finally around her second birthday the gastro drs in pittsburgh thought maybe she had an obstruction and that was causing her FTT and weight loss.  They ordered an upper GI and a lower bowel series.  In a typical child the intestines are on the left and the appendix is on the right.  Ella had what is called malrotation of the intestines.  Only her malrotation was quite complex.  In a typical malrotation case the intestines are on the right and the appendix on the left.  With Ella her appendix was on the left, her intestines however were in the middle of her stomach and they were wrapped and twisted around her kidneys and liver not allowing food to pass through therefore not providing her with the nourishment that she so desperately needed.

On November 22, 2010 she had the surgery to repair her intestines.  At that time they did not know that her intestines were twisted.  The surgery that should have taken 2-3 hours took over 6 hours!  The wait was awful!  At the end of it Ella's stomach was fixed.  She spent the next several days in the hospital.  She was on heavy amounts of pain medicine and slept a lot.  By the time it was all over she was eating and the hope was she would gain weight.  And she did...however kids triple and then some their weight between birth and their 2nd birthday.  After they turn 2 their growing slows down dramatically!  When she went in for surgery she was a whopping 13 lbs!  When she left she was a little under 12 lbs.  By the time she went back to Pittsburgh for her post - op appt she was up to 15 lbs.  Slowly she started to gain weight.  Today she weighs approximately 30 lbs....at the age of 5!

This was taken day 4 after her surgery

This was the day she came home from the hospital following her surgery

This was about 6 months post - surgery 

Does she have CP or doesn't she?

This was the question that we had for the doctors at Shriners shortly before she turned 1.  Unfortunately we did not get that answer until much later.  

When we took Ella to Shriners for her to be evaluated she cerebral palsy (aka CP) they found out that Ella had bilateral hip dysplasia.  She had to be in this brace for 6 months....

To say thats she hated this brace would be an understatement!  She cried most of the time that she was in it.  Looking back now I am not sure if it was because of the brace or because she was in pain in general.....Take a look at the post immediately after this to understand that statement.  Most nights were sleepless for us as she would cry most nights because she was so uncomfortable.  

This brace limited her ability to move, sit up, roll over, crawl and walk.  it took a lot of patience during this time to not go bat shit crazy!  

As far as the CP goes it was determined that she 'might' have mild CP due to her floppy muscle tone but she seemed to be doing okay so it wasn't something that we really pushed to determine more information.  To be honest the whole 'low muscle tone' thing is something that I will address in another post.  I have seen kids with severe CP and I am just thankful that Ella is not one of those kids!!  

Ella's exciting entrance

The day that Ella was born started much the same as most every other day but it ended rather excitedly.

The day before she was born I was in a stressful family situation.  I won't mention specifics of what or who was the cause of the stress here....knowing that I was under stress is all that really matters in terms of Ella's birth.  Because of this stressful situation I was in I started to have contractions even though I was receiving progesterone shots to prevent preterm labor.  I decided the best thing for me to do would be to stay home and rest on my left side.  The next morning I had an OB appt anyway so I figured I would address the contractions at that time.

The next morning (9/30/08) at 830 I went to the Dr.  He decided to err on the side of caution and do a non stress test.  This test showed that I was having some pretty strong contractions every 4-5 minutes.  I was immediately rushed to Hamot's L&D.  At the hospital they gave me a shot of brethine to stop the contractions and a shot of steroids to mature Ella's lungs if she was born premature.  The brethine caused my BP to bottom out but the contractions stopped.  Later that evening they wanted to do another non-stress test to check on Ella especially with my low BP.  They said that the heart rate on the monitor was mine.  I thought that 80's were too high to be my BP.  To make me feel better they ordered a sonogram to check on Ella.  She was resting so her HR was in the 120's during the sonogram.  A little bit after the sonogram they tried the non-stress test again.  This time they were getting readings in the 70's.  Again they said it was my HR even though I felt for sure it was Ella's.  This went on for 4 hours.  Finally the Dr came in and said that the HR on the monitor was in fact Ella's and I would need an emergency C-section.

When they did the surgery they found that she had a knot in her cord cutting off her circulation and thus causing her decreased HR.

She endured several set backs while in the NICU for 18 days....she had a hole in her lung and needed a chest tube.  She had severe jaundice and required the bili lights for 10 days.

  She also was on CPAP for 7 days and required oxygen for 10.  In addition she kept having what they called bradycardias.....this is where her heart would become too low or sometimes stop.  She ended up leaving the NICU on an apnea machine to track and monitor these episodes.

Finally on October 18th she was released to go home weighing a whopping 4 lbs 9 oz!

New blog. New fight!

While I do have another blog I rarely post there and to be honest I really don't want to keep posting 5 page long updates on Facebook in an effort to keep everyone updated on how Ella is doing what is the latest update on her.  So I figured this would be ideal.  A blog dedicated to the most special, amazing, strongest, little girl I will probably ever know!  

In the next few days I will sit down and post her history.  I will do several posts on everything significant in her life from her very dramatic premature birth to the times we almost lost to her ASD diagnosis to the current situation that is plaguing our household.  

Some people have asked me and mentioned that they would like to put Ella on a prayer chain.  I will not object.  In fact I will be keeping this blog open so if anyone would like to forward it on please feel free to do so.  At this point Ella can use all the help she can possibly get!!!


Much love,