Early On: Week 1

The day after the IEP, Bella had her first day of school.  The four of us went, not knowing exactly what to expect.  The time that we are there is broken down into different activities.  The first 15 minutes of every class is in the Music and Movement room.  It is a way for the kids to use up some of their energy so they can focus in the classroom.  The first day Bella didn't know what to think about everything.  Miss Carley welcomed us to the class and introduced us to Miss Jackie.  Jackie is a parapro who helps out in different classrooms.  Bella seemed to feel comfortable with both of them.  That day only two other students were in class and she was very interested in watching both of them.  She didn't really expell that much energy during this time. 

The next part of class occurred in the classroom.  The kids sat in chairs in a semi-circle around Carley.  She started off this part of class by singing a welcome song to all the kids.  She then pulled out a Nemo Bubble Blower.  Bella went crazy for this.  She LOVES bubbles.  Nemo blew bubbles at all the kids.  When he stopped, Carley incouraged the kids to say more and to use the sign for more.  Bella doesn't say the word more, so she just kept saying "Please!"  Bella learned her first sign that day:  More.  After Nemo was put away, the kids sang two different songs.  The first one the kids shake maracas and the second they shake pom poms.  Bella just sat back and took it all in.  She wasn't really into shaking anything during any song.

Centers come next.  There are three different centers set up that teach different skills.  Each child is allowed to do all the centers; it is a very laid back time.  I don't remember what type of centers were set up that week, but I do remember Bella not wanting to do any of them.  She just wanted to take it all in.

Up next is snack time.  The kids were served water in sippy cups and also applesauce.  The way they wanted to kids to eat their applesause was through a straw.  Bella, again, wanted nothing to do with this.  She is not normally a huge fan of applesauce and definately not through a straw.  She would much rather just eat chunks of apple. 

The first day of class went by very quickly.  Bella was completely exhausted and fell asleep almost instantly once she was in her car seat and we started driving.  I just remember hoping that she would become comfortable enough to actually participate and learn things from class.

Early On

Now, don't get me wrong, now that Bella is finally in the Early On program I am very happy, but getting here was crazy.  Dr Leber gave us the telephone number and said to call so Bella could start getting physical therapy in the home.  So, we gave them a call the same day as the appointment.

The phone number was to the GISD.  The Early On program is ran in one of their buildings.  I spoke with someone there who took our information and said she would send paperwork in the mail and set up an initial evaluation.  I needed to have all the paperwork filled out prior to the evaluation since this was to be given to the evaluator.  So, a couple weeks went by until the first evaluation occurred.  On the day of the eval, Melissa came to our house.  I was very surprised at how well Bella handled it.  Melissa got right down on the floor with her and made her feel very comfortable.  She not only looked at Bella's gross motor skills, but also fine motor, communication and emotional.  She followed a checklist to see how far ahead or behind she was developmentally in all the catagories.  This evaluation happened on a Friday afternoon.  She said she needed to come back in a week and go over her findings and would let us know if Bella qualified for the Early On Program or not.

So, on Friday, one week later, Melissa came back out to the house.  She went over everything that she had done the week before.  Like we already knew, Bella was developmentally behind in her gross motor skills.  Everything else she was either age appropriate or ahead.  We were told that because of how far behind she was in her gross motor, she qualified for the program.  The next step was to wait for Clio Area Schools Special Education department to contact us regarding what information they needed for Bella's file.  I was contacted and told that I had to bring Bella's birth certificate, immunization record and two pieces of mail showing that we lived in the Clio School District.  I was told to come in teh following week with the information and she would copy it.  So, I took in the information and was told I had to wait again for the GISD to call me.  Now that she qualified for the program, another evaluation would have to be done with therapists and teachers.

By now I was just getting frustrated because I felt that the process could be so much simpler.  But, I really thought Bella needed this, so I jumped through their hoops.  So, I waited for their call.  It happened to come while I was in the hospital having a c-section for Hayden.  I didn't get a chance to call the lady back until the following Monday.  Ironically, the lady I was now talking to in order to set up Bella's second evaluation was the exact same person I first talked to.  I mean really?  I just couldn't believe it.  But anyways, this call happened on November 28.  She didn't set up an evaluation for Bella until January 2.  So, from the end of October to January 2 we had to wait to see if she would even get physical therapy. 

Finally, January 2 came along.  Tony, Bella, Hayden, and I went to the GISD and met Carly and Stacey.  Carly was the Special Education Teacher and Stacey was the physical therapist.  They both did their own evaluations of her.  At the end, we were told we had to come back to following Wednesday to go over their findings.  On Wednesday, we all went back to the GISD and had an IEP, Individual Education Plan.  During the meeting we were told that yes, Bella qualified for physical therapy.  Stacey would now be coming to our house once a week for an hour.  Finally, some progress.  We were also told that along with the therapy, Bella was now to go to class once a week.  The class was taught by Carly and it had 4 other students in it, all of which were in the Early On Program.

After the IEP, we were relieved that this was finally going somewhere.  I felt as if Bella was going to start getting the help she needed.  Not only would she be getting the therapy, but also socialization and cognitive skills.  The day after the IEP would be Bella's first class.  The following week the program had a field trip planned, so class and therapy were cancelled.  Bella's first therapy session actually happened at the field trip at Skateland and the first home therapy session happened the following week.

What are CPK, Aldolase, and Benign Hypotonia?

So, after leaving Dr Leber's office and after the letter came in the mail containing the test results, we had a lot more questions that answers.  So, Tony and I both took to Google to find out all we could.  CPK and Aldolase are the two tests that Dr Leber wanted.  Here is a little information about these tests.

CPK:
The body creates an enzyme called 'creatine kinase' (also known as CPK/CK) that normally lives inside  muscles. That enzyme (protein) is important for energy production within muscle fibers. When muscles are functioning normally, CPK levels in the bloodstream are relatively low. But when muscles are damaged, the muscle cells split open, causing their contents to spill out into the bloodstream. This creates a rise in the levels of CPK in the blood. In Duchenne muscular dystrophy(DMD) there may be 10 to 100 times the normal amount. Measuring CPK levels may verify that there has been muscle damage and may indicate more muscle damage to come.  (http://www.parentprojectmd.org.np/Contents/Main/Diagnosis.html)

Aldolase:
Aldolase is an enzyme found throughout the body, particularly in muscles. Like all enzymes, it is needed to trigger specific chemical reactions. Aldolase helps muscle turn sugar into energy. Testing for aldolase is done to diagnose and monitor skeletal muscle diseases.  Skeletal muscle diseases increase the aldolase level found in a person's blood. Skeletal muscles are those muscles attached to bones and whose contractions make those bones move. When the muscles are diseased or damaged, such as in muscular dystrophy, the cells deteriorate and break open. The contents of the cells, including aldolase, spill into the bloodstream. Measuring the amount of aldolase in the blood indicates the degree of muscle damage.(http://www.healthline.com/galecontent/aldolase-test)

Bella's CPK levels came back in the normal range, while her Aldolase levels were slightly elevated.  Dr Leber was concerned, so that is why he sent her test results to Dr Dowling.  Based on the levels and Dr Leber's examination, Dr Dowling saw no reason to see Bella.  As stated in a prior post, he thought she might have something called Benign Hypotonia, but that was not a reason for her to see him at that time.  So, what exactly is Benign Hypotonia?

Benign Hypotonia:
Benign congenital hypotonia (BCH) is a diagnosis of exclusion given to many children after all tests have been exhausted. In some cases, families are never given a diagnosis for their child. BCH is a nonprogressive neuromuscular disorder that does not worsen but tends to improve with time and intervention. The cause of BCH is unknown and there is no cure. Researchers have found a high familial incidence that may indicate BCH is of autosomal dominant, genetic origin (Cohen, 1998). There is no genetic testing available for BCH at this time.(http://www.earlychildhoodmichigan.org/articles/8-03/CohenWhitt8-03.htm)

Dr Leber had explained to us that if she did have Benign Hypotonia it just meant that she had low muscle tone and would always have to work at keeping her muscle tone.  He said she wouldn't be picked first for sports, but she would be able to at least participate.  He gave us the telephone number to a place called Early On and told us to contact them to start physical therapy, which should help Bella become stronger.  Thus began the run around and jumping through hoops to have Bella evaluated and entered into the Early On Program.

Dr Leber

Unfortunately, October 17 came around and Bella still had not taken a step on her own.  So, we went to see Dr Leber.  Fortunately, he visits Flint on Mondays, so we didn't have to travel to Ann Arbor to see him.  He and his nurse were very friendly.  Bella, being afraid of doctors, didn't like being there, but he handled it well.  At this time, Bella was still crawling and pulling herself up to stand, just not walking.  He did a full assessment and concluded that there was nothing neurologically wrong with her.  He wanted to do a couple of blood tests to see if there were issues with her muscles.  He said that he didn't see any reason for her to be seen by him again until she was 2, because he saw nothing wrong with her.  If the tests came back with abnormal results we would be contacted.  So, we went across the hall and had her blood drawn, which was a very interesting experience.  It only took 4 of us to accomplish the blood draw, but they got what they needed. 

Of course, we wanted to know the results right away, so we called the office when we hadn't heard anything in a week.  We were told that if the results were normal that we would get a letter in the mail stating that, and only if the tests were abnormal would we get a call from the doctor.  Well, we finally received a letter from Dr Leber with the results.  He did a CPK test, which was normal and an aldolase test, which came back slightly elevated.  He emailed the results to Dr Dowling to ask his opinion because the one level was high.  Dr Dowling concluded that without seeing Bella and just going off of the test results and Dr Leber's evaluation that she might have Benign Hypotonia.  Dr Dowling also told Dr Leber that he didn't think he needed to see her until she was two, if she still wasn't walking.

Dr Leber referred us to a progam called Early On.  It is a government funded program through the local ISD.  He said that they could start physical therapy with Bella and that should help strengthen her enough to start walking. What we didn't realize was the amount of time it would take for the Early On Program to actually evaluate Bella and have the physical therapy start.

15 Month Well Visit

 In July, we went to see Dr Horning, Bella's pediatrician, for her 15 month well visit.  We expected the visit to go like every other well visit thus far, but we were taken by surprise.  Dr Horning was concerned that Bella had not taken a step on her own up to this point.  It was kind of surprising to us that she was concerned because we had taken Bella in to the office a week prior because we thought she had pink eye.  We saw a different doctor in the practice and he had said he wouldn't be concerned at all that she wasn't walking yet.  He normally didn't even start thinking about something being wrong until a child was 2 years of age.  However, Dr Horning saw things differently.  She told us that she would be making an appointment for Bella to see a Neurologist as soon as they could make an appointment.  She really didn't explain much more that that, only that she wanted a specialist to take a look just in case something was wrong.  Tony and I both though she was crazy for sending us to the neurologist.  We had just seen a doctor the week before who said she looked completely fine, why would this doctor think something completely different?  We were both of the opinion that Bella would be walking by the time of the neurologist appointment and we would just cancel the visit and not have anything to worry about.  About a week later, we heard back from the pediatrician's office that they had made an appointment for Bella with Dr Leber in the middle of October.  They said we were lucky that they could fit us in that quickly.  Quickly?  It was 3 months away!  Tony and I both thought for sure we would be cancelling the appointment with Dr Leber because she would have to be walking by then.  She would be almost 18 months old by that time.  She should at least have taken a step on her own, right?

A little bit of background

My daughter, Isabella, was born in April of 2010.  At the time she was an only child, but she became a big sister in November of 2011.  She was a c-section baby after an induction and 18 hours of labor didn't help her budge.  She was 9 lbs 9oz and 21 inches long. 

Because she was a c-section and a large baby, she had a condition called TTN, Transient Tachypnea of the Newborn, which is a fancy way of saying she was breathing too fast because she still had fluid in her lungs that wasn't expelled during delivery.  She had to stay in the Special Care Nursery at the hospital for 5 days, during which she couldn't have anything by mouth because she could have gotten pneumonia due to aspiration.  She was hooked up to an IV of TPN for nutrients.  We were so happy when we were told she could go home with us.  It was a great day.  Since then, she has been a fairly healthy baby.  She has had croup twice, the stomach flu once, Roseolla last summer, and some seasonal allergies.  Everything was going great until her 15 month well visit.