Gaining More Understanding

Today I had trigger point injections on my shoulders, neck, and back of my scalp. I have to admit the scalp injections were the weirdest by far. I was given them on the scalp to try and help reduce both the frequency and severity of my migraines.

This morning, once again I woke up with one (sigh), this one offered tons of pressure behind my right eye. Dr S was right with the final scalp injection that within a few minutes the pressure would leave.

The muscles on my neck and shoulders were tight as rocks when he started the injections. By the end, they had already loosened greatly. However, unfortunately I am looking at a series of trigger point for a while before my muscles relearn how to relax.

One thing I have learned through the trigger point process process here is through the combination of ultra sound and trigger point this office can identify exactly which muscles are tightening up and why. In my case these muscles have fibrous tissue within the muscle causing cramping, pain, and other issues. Because of this fibrous tissue the nerve endings are not responding properly. Combine this with arthritis and well, yeah there are days I am quite uncomfortable.

Busy Month

This month has been a crazy busy month for us. To start with we had the normal physicals for the kids. These physicals are also important for paperwork that is needed to be updated. Well in the process we ended with unexpected specialty appointments for several kids.

Celidah was referred to neurology for her migraines because they have suddenly increased and been worse. Thank goodness the MRI showed that her migraines are just that, migraines. She now just follows up as needed for med refills, or if her migraines become worse again.

Jade also received a neurology referral. She has been having severe headaches, dizzy spells, and nearly passing out. After seeing the neurologist she was referred to a cardiologist and connective tissue/joint specialist. She too needed and MRI, blood work, follow up, and more dr's.

We discovered her "monthly" cycles are not regular enough, to heavy, and since they have been affecting her school attendance, she needs additional meds to help stabilize the hormones within her system. If this does not work, her Dr, has other treatment options to help her out.

Right now the biggest concerns for the neurologist to either confirm or rule our for Jade are chiari malformation (something with the brain stem *I think*) and Elhers Danlos Syndrome (EDS). We already know she has hypermobility syndrome, and according to the neurologist on the (something) bending scale she hit all the bending points plus some others.

He said the dizziness or vertigo could either be heart related or chiari related. Well we now know that at this point these are not cardio related. She had an echo and EKG done and both came back good. However, her cardiologist said with EDS being suspected she now needs to being followed by a cardiologist every 6 months to reevaluate and make sure things have not changed.

Zach also needed additional specialty appointments. (sigh)... He was sent off to an orthopedic specialist. During this appointment he too was diagnosed with severe hypermobility syndrome, and sent to physical therapy to start with. She also recommended that he see dermatology for the excema looking rash he has. She does not think it looks right, and with the ointment not helping and his rash getting worse after playing outside, combined with his joint pain, he was also referred to rheumatology.

The best part was that Ellie is still growing and gaining (on her curve). She is also stable right now with her long list of medical issues. We did not need to add any new doctors to her current comprehensive team.

Corbyn's platelets, while they did drop, they have returned close enough to his base. He was at 35K and he is now at 25K. This is close enough for us and his hematologist at John Hopkins. Oh and Corbyn was able to have his Flovent dropped completely! If he continues without needing his rescue inhalator for the next 6-8 months we may be able to have the asthma removed! He will only have ITP!! We are so happy about that.

Jairon only has asthma and during his physical was trying to convince his doctor he did not need his asthma meds either nor was he coughing. LOL he was giving this argument as he was coughing. The kids doctor and I just looked at each other and smiled knowing what what really going on and he was not ready to even be dropped down yet.

However, if the older kids are able to go all summer without any asthma issues then we will try dropping them down one dose step and see how they do. Ellie on the other hand will not be able to be dropped down. Every time we have tried, she gets sick and ends up back in the hospital.

Bookworms....

In someways having a bookworm is a wonderful thing. I totally love the fact that all 6 kids love reading and all read above grade level. However, what I do not like is when a child disregards instructions from his teacher regarding classwork, homework, and important projects just because they "are to boring." 

Granted there is a large variety of books available to read that are far more interesting to read than text books. But when these books begin effecting grades, then a line must be drawn.

Yes, this is where we are as of today with Jairon. As of today his teachers and I have all agreed that he is not allowed to bring any books to school unless they are assigned to read in the classroom. Sadly, even the reading/literature teacher agreed he needs to have restricted reading time in school. This is a decision she hates having to make. Yet, if he is going to have a chance to focus and bring his grades up, this is the right decision.

Growing Up

Yesterday Zach was so excited to show me how grown up he is becoming. The older kids had a temple trip and knowing I was only leaving base for a few minutes, I forgot to grab my military ID. I did not realize this until after the kids had left for Washington DC and the girls had theirs with them.

Well, hoping the phone was at home I called. Zach answered and found my military ID, hopped on his bike and peddled just off base to one of the DOD contractor office buildings. The smile he had as he met me with my ID could not have been any bigger.

We loaded his bike into the back of the truck and proceeded home. The gate guard laughed at him as he just had to tell him he got to ride off base on his bike to bring me ID.

He was bouncing off the wall with excitement when he got to tell dad about his exciting bike ride off base.

Journey Through Autism, Continues

By the time Jade was five, we were knee deep in her daily therapy sessions, weekly dance and gymnastic classes. We had found the best selection of therapists that responded with her and she was making progress.

One of the struggles we faced was our fight against medicating her. Every doctor we had seen had tried to force to put her on the normal "autism medication cocktail" right after her official diagnosis. This was not an option to me, as at the age of two, I refused to try the medications first. Our next option was dietary.

Our next stop was to see an allergy/GI specialist because she still not growing or gaining weight. At the age of 5, she was still in 2t clothing. After allergy testing we discovered she had many food allergies. With this in mind we placed her on an elimination diet, carefully controlled her food, and made everything from scratch.

Once the "offending" foods for her body had been eliminated, and her system cleansed, her body slowly started growing and gaining weight.

Additionally, during this time, we began teaching her sign language. Implemented PEC's (or Picture Exchange Communication System) in the house, labeled EVERY with the word and picture of the sign, and learned a new way to communicate.

During this time she was in therapy, we rarely heard a word come from her mouth. Jade communicated best with noises, fits, screams, crying, and melt downs. Learning how to handle her melt downs and sensory issues was important for the family and her safety.

Two key comments I remember making to Jade that helped me realize her thinking pattern were "sit down and plant your feet" and "knock it off." When she was told to plant her feet, she did just that. After looking for her I found her out side looking lost and confused with her feet buried in the dirt. After being told to "knock it off" (some behavior) she went running to her room, grabbed all her blocks. Came running giggling with her shirt stuffed. Very carefully, Jade lined up all her wooden blocks on the back of the couch, then proceeded to hit them as hard as she could across the room.

Once I told her (without realizing what I was doing), to "knock it off", so she did just that. Lined her blocks up once again, and knocked her blocks off the back of couch. She did this over and over until I took her blocks, resulting in another fit. She was confused and lost. Why? She was doing exactly as I had just told her to do several times in a row.

Suddenly realizing what was going on I tried to get her playing with her blocks in a different fashion. This was not going to happen. She dead set on following my instructions. At this point, I simply bit my lips and let her "knock it off" until she was finished.

With this realization, I was finally able to reach out to her and peek inside her boxed up world. We were finally able to start experimenting as a family with new ways to try bond, stop her temper fits, increase communication skills, and learn new things about her.

During this time, I learned to accept the fact that a child with autism is just that. A child with autism and perfect as they are. I also became to see the world of autism like that of a remote controlled toy.

Some remote controlled toys are only programmed to move forwards and back, others can also move side to side. While others have no limitations in their movements. Why children with autism are not wired to think and behave like other child is something we may never know. However, I know my daughter has overcome so many obstacles in her life to become who she is.

I also know that because of who she is, and what she has become, she can and will become whatever she puts her mind to.

Continuing on with our journey through autism.

After Jade was officially diagnosed with the 299 autism diagnosis, many new doors that I had no idea were available opened up for her.

During this time we lived in AZ and there was a special program designed specifically for autistic children in the early intervention program. This program offered state funding for hours each week of therapy. When I say hours I mean hours. Her therapy was basically a full time job.

She continued the physical, occupational, feeding, and speech therapies. Then in addition, she started receiving community support, ABA (applied behavior analysis), sacrocranial, and behavior modification. Basically, if there was anything that might help these children with developing skills they were given the therapy hours.

We told to put her in dance and gymnastics as well for additional therapies as they would work both fine and gross motor skills and offer even more therapy hours without her realizing it.

Her comprehensive team came to the house for the first meeting and we sat and developed her FSP or family service plan. Basically, what skills did she need to function and how would we great those needed skills into goals. Next, how would we break those goals into achievable steps for her. Finally, what role would each therapist play, and how would they use us as a family and team with the therapists to help her learn what was needed. Seems simple? Well not as simple as it seems. Especially when your child is not hitting any of the needed mile markers needed.

Finally we had a plan in place and started working with her team. The first few months were difficult as we had to weed though the therapists to find the right match for Jade. Not every therapists had the personality to work with her. Many she simply shut out and refused to work with. This had been explained as normal and that we would have to sift through their therapists until the right team was in place and they were used to moving until they found the right kids.

This was not an easy time for the family. Everyday Monday-Saturday we had therapists in and out the home. We had very little private family time. The therapists pulled Celidah in and taught her how to play with her sister. They brought in neighborhood kids, and they played with the girls. In time, the therapy sessions became neighborhood play times.

Learning to play was very important. Why? Well, children learn through play. They explore their world through play. In time, the things they learn from play develop their adult abilities and how they cope. It was through all this "play time" that Jade eventually started coming out of her shell and trying new things.

We created social story videos for the girls. They learned how to answer the door, make beds, play kid games, and many other things by staring in their own movies. They loved watching these movies and sharing them with their friends. Most important, Jade started responding correctly in some situations because of her movies.

Journey into Autism

With this month being Autism Awareness month, I thought I would share a bit our journey through the world of autism.

Our family started out like every other family. When our oldest was born, she was a bundle a energy and learned everything very quickly. She crawled, walked, talked, ate, did everything early. Celidah had even taught herself how to read and had moved onto chapter books by the age of 3. In my mind this was normal for children as she was my only experience.

Two years later, Jade was born. After a few minor complications during her delivery, and the cord being wrapped around her neck we looked forward to the same bundle of energy her older sister had been. We soon discovered this would not be Jade's start.

Very quickly we realized that she was not meeting her milestones, growing like she should be, had eating problems, was tongue tied. In short, these developmental milestones were falling further and further behind. She was falling behind in both her developmental and physical milestones.

An early childhood development evaluation determined she needed early intervention and not just minor intervention. Once the evaluation was completed, she qualified for speech, feeding, physical, and occupational therapy. After about two years minimal progress had been made.

Around this age we had also been instructed to have an Autism screening done. By this point, she had already had other neurological screenings done to rule out more severe disabilities. Her doctors and therapists wanted to know why her growth was still very slow, she was not walking, babbling, not eating unless it came from a bottle,

I had friends with children with autism as well and we had talked and I knew she had to many of the signs to ignore, yet I felt if I worked with her more I could change her. Maybe I could love the autism out of her.

I think this is the dream of every parent of a child with a disability.

Finally, one day I realized I needed help and a diagnosis. One this day, both girls had been sitting at the table playing with playdough. All Jade would do was scream at her blob. Of course playdough will not respond to a screaming child. Well in her fit of rage she flopped off the chair, landing head first on the linoleum covered cement floor. She pulled herself up to the chair like nothing had happened. At this moment, her lack of reaction to pain told me something was not right. I broke down and made the appointment for the screening. By this point she was nearly three.

Because she was nearly three, the diagnoses was needed, for her to continue her therapies.

I thought I was prepared for the appointment. However, I learned I was far from emotionally prepared. Yes, I knew the facts. I knew the signs. I was not ready to hear, "your child has severe/profound autism."

During this appointment nearly 13 years ago, she could not keep eye contact, had no verbal skills, in fact the list of things she could not do was terrifying to me. The doctor diagnosing her, let me know that she would never walk flat footed, gain verbal skills, be able to attend regular school, function in society. In fact, we were told she would by the time she was a teen she would require the skills only in a specialized group home.

I left that appointment totally devastated. According to that doctor my child had no chance for any kind of a future.