More Therapies!

Age 2

I’ve barely had the time to sit down for even a rest, this week has been filled with Therapist(s), evaluations and the Neurologist. Yesterday was our first appointment with the new neurologist. He informed me that because Emmanuel has had a serious stroke that has caused brain damage – he will also be prone to seizures.

I wasn’t expecting to hear this!

Speech Therapist (ST): We introduced two signs to practice visually and verbally for Emmanuel to learn, ball and cookie. These two words will require both hands to complete the sign. We’re seeking a path to give Emmanuel a way to communicate and use motor skills in his left hand.

Physical Therapist (PT): Concerns about his balance and walking into walls, and sensory processing (SPD). The muscles in his wrist/hand and ankle/foot are very tight. When stretched the muscle is snapping back into the tightness. He is being referred to a DPT and another OT evaluation.

Update:
At this point in time, I completely stopped blogging, quilting, and life as it once was completely changed forever!  For the good though 🙂

Advertisements

More Evaluations

Age 2

Emmanuel was sent to a Psychologist for an evaluation from his PT because of the concerns with his balance, walking into walls, sensory processing (SPD) and for symmetry OCD.  He will be tested for symmetry OCD and autism. Further testing will be 4132771_1430242160.4692_updatescompleted next week.

Physical Therapist (PT): It was suggested that a brace is fitted for Emmanuel’s lower leg for how tight his ankle/foot is. When stretched the muscle is snapping back. Took Emm to two different PTs for evaluations (second opinions). Both PTs suggest the brace and feel that with the early use it will train his muscles to stretch and relax in a natural way.

Hoping that with time and training his muscles would stretch and not snap back, and outgrow the use of the brace. Without the brace, the PTs stated that the tightness caused by the cerebral palsy would eventually continue tightening resulting in foot naturally staying in a tip-toed position to relieve the tightness and his toe to drag across the ground (has already started) while he walks.

Occupational Therapist (OT): has concluded that he will have to go through a series of constraint-induced therapy. By isolating the use of his right arm/hand, will force him to use and improve the upper extremity functions of his affected arm/hand.

With help, we were able to obtain the programs/materials needed and our signing has improved tremendously! We are up to almost 10 different signs and learning more each day. Emmanuel is also attempting to repeat a few of the words as he signs. He’s learning how to communicate.

Thank you

Learning Curve – Life After Diagnoses!

Age 2

The last few weeks have been a roller coaster – The sensory meltdowns are happening more frequently. It’s also been determined that he is both a sensory seeker and an avoider. For me, it is hard to understand exactly what the SPD is, and harder to relate and comprehend the unbalance that is happening within his body. It’s amazing to see the items he seeks and uses as a weight to accommodate this balance.

He goes through 4 – 7 episodes of piling every day, meaning he stacks everything (toys, boxes, shoes, step stools, pillows, etc.). Anything he can get his hands on and carry is put in the corner and/or under a table and places himself in the center of it then piles it all up on top of him. If you try to stop him during one of these episodes he will literally go into a raging out of control fit until you allow him to go back to his piling.

We are in need of a weighted blanket, weighted vest and a weighted lap pad to help with this weight pressure seeking he needs. These items are very expensive and the medical insurance does deem them as being “medically necessary” so they decline the prescriptions.

Emmanuel has also been fitted for a hand brace that should be ready in another 2 weeks. The brace will help keep his left-hand thumb out instead of being within the fist his hand is always in. it will also help him use his hand since it will train the muscles to extend instead of always contracting. Well, that’s the goal anyway.

Yesterday, we met with his psychologist who went over the test results of a procedure we took 2 weeks ago. Emmanuel has been diagnosed with being autistic, with autism spectrum disorder. I’m trying to get a referral for another second opinion, but that isn’t until next week.

With the help from the fundraiser so far we have been able to purchase a communication device, Proloque2Go, Dexeria and the material/program for us to learn sign language, his arm brace, and some therapy equipment for at home. We have been learning to communicate with each other and that is going great! He’s now signing about 20 words and attempting to say the word as he does the sign, or make the sound of the animal.

For bird he tweets while doing the sign, a duck he quacks while doing the sign, owl he says owwww oww is like his hoot and does the sign, and chicken he signs and attempted to bok bok bok. Juice he’s doing ju, trying to say bubble. The other signs he’s doing is milk, more, dog, apple, juice, cookie, eat, bath, all done and a bit more.

Emmanuel has made great improvements over the last month, and I’m very proud of him.

Pediatric CVA Stroke Survivor

Pediatric CVA Stroke Survivor

My name is Emmanuel and I’m 2 years old. When I was 4 months old I came to live with my Nana. We spent the entire summer together and had so much fun! After four months she sent back home to my Momma, in October 2013. After I was home, between the age of 8 – 11 months old, I fell ill and the hospital misdiagnosed my symptoms as severe flu.4132771_1428722456.9644

Right before my 1st Birthday, I came to live with my Nana again – She’s one smart cookie! Right away she noticed that I had some things going on that didn’t seem right and took me to the doctors. My left-hand doesn’t function properly and my leg doesn’t always work right (balance issues). I walk into walls and fall down a lot for no reason, I can’t talk either.

After months of going through tests to find out why my motor functions were not working properly, my neurologist issued an MRI. We went down to the Phoenix Children’s Hospital and had my MRI. After the MRI those nice nurses gave me this awesome plush Dog! We went home and the following morning my doctor called my Nana right away.

The neurologist informed my Nana that I suffered a CVA Stroke that damaged 20% of my right brain and which has caused the left side of my body to have cerebral palsy, hemiplegic & hemiparesis. Since January I have been in and out of doctors and therapist. I have a speech therapist, a physical & occupational therapist and a food therapist.

My Nana has a LOT on her hands and is working only a part-time job of 20 – 25 hours a week so she can take me to all my doctors and therapist so they can help me get better!

My speech therapist informed my Nana that I need to learn to communicate prior to starting school in a few months and stated that we need to learn sign language so I can learn to communicate with everyone. It will help my visual/audio skill as well as my motor skills by having to use my hands. There are a lot of therapeutic equipment and learning disability programs I need as well that is not covered under my insurance.

Our Goals: To be able to obtain the technology equipment & programs and therapeutic equipment that is currently necessary

Emmanuel will have to undergo a lifetime of speech, physical & occupational therapy. The damage that occurred to his right brain and left the side of the body is irreversible. He may never be able to speak properly and with the lack of communication & abilities, Emmanuel has a lot of frustration which has caused behavioral issues.

Due to his age, we cannot determine the extent of the damage has caused to his learning abilities, so early intervention has placed him on a waiting list to start school. Please help save Emmanuel so he can be the little boy that will one day pick up that baseball bat and soar a home run!

Thank you

Terrifying Delusions or Hallucinations?!?!

I have perm guardianship of my 5-year-old grandson. At age one, he was diagnosed with having 2 CVA strokes, cerebral palsy, complex partial seizures, autism and sensory processing disorder.

He’s extremely low verbal, mentally delayed (age wise) and developmentally delayed but academically excels. We have both struggled in more ways than one but have come through, conquered and moved to the next challenge ahead of us.

We limit the content of what and how much he watches on the telly and with any of his toys. He’s also not your typical “boy”, very mind challenged/wit.

There is one thing we have not been able to conquer …

A little over 2 years ago – suppose it could have been longer – he started seeing things, things that neither I nor my husband could see. Things that would literally scare him to death – 100% panic attack, frozen in his own body – petrified. I can’t explain the intensification of his horror. He’s literally frightened to death of whatever he sees!

The room is off limits! –
What child wouldn’t love to have a huge bedroom all to themselves? Not this one – there was something about this room that he refused to go into other than to sleep. He would not play in the room. He would not leave his crib/bed until you came in to get him. He wouldn’t get dressed in the room. Nothing! Unless you stayed in the room with him.
We moved the beginning of this year to another state. With the new house came a little boy that plays in his room now!!

Something/one was on/in the stairwell –
We are all in the kitchen at my Aunt’s house on vacation and suddenly we hear him scream/cry in the most horrifying pain – My husband and I go running. Only to find him scared stiff at the foot of the stairs – like Freddy Kroger was up there, just waiting to mutilate him. If we even tried to put him down on the first step, or if we tried to walk up the stairs together, the terrified panic increases drastically.
The whole family got together to vanquish the monster in the stairwell, with no success! He finally passed out on the couch and we took him upstairs to bed. The next day, it was like nothing happened!

Something was in the bathtub –
He has a fascination with water, he is literally drawn to water and I must constantly keep IMG_6720.jpga 100% eye/hear on him around it! From my desk, I have direct eye/hear shot of the bathroom and I go in there every few minutes.
He’s playing as nice as can be with all his underwater animals as he always has. Suddenly that screech of terror was unleashed and he completely jumped out of the tub. I literally dropped what I had in my hands and went running.
He’s staring at the tub with a petrified look upon his face while chanting, “I cant pee wet” over and over again. I examine the tub thinking there’s a floater or something, but there was absolutely nothing! Nothing, accept my the new heart attack I was having (figuratively speaking).
I asked, “did you pee in the tub”, reply: “No” then back to chanting. “Did you poo in the tub”, reply: “No” then back to chanting – meanwhile the terrifying sobbing continued.
I explained there was nothing there. I took photos and showed him there was nothing there. I felt the water it was warm. I pretended to catch this evil monster and flushed it down the toilet.
I had to literally drain all the water and run a fresh bath – then it was a fight to get him back into the tub, but he gave in – I stayed and bathed him all over again like it was the first time he was in the tub that evening. All was fine about 5 minutes later.

Run for the hills, the spiders are coming! –
It’s only been within the past 1.5 years that my grandson has been able to verbally been able to express himself (well at least to a point that we can semi-understand him).
Spiders! Spiders! They seem to be everywhere! I swear, NOT in my house! Playing nicely in his room, I decided to just rest my eyes for a bit only to be woken to a 5-year-old stampede of terror crying rushing towards my room.

Apparently, there are spiders!! We have never, ever, seen any spiders in our house, not even the basement; but he sees them! There are times he sees them while eating and refuses to go back into the kitchen to finish eating. Other times it’s in his room while playing. Whatever it is, it’s extremely random and spontaneous.

While we are on the topic of spiders, here’s another situation …
He will go outside on our patio with no problem – With shoes on! If he’s barefoot or in socks – Nope, not going to happen! You’d think the patio floor is flowing lava ready to devour him. He will frantically run in an utter panic on the tip part of his toes (like a ballet dancer) and leap onto us sitting in the wicker loveseat.

Dinosaurs save the day! –  IMG_6721
He will play for hours on the floor with his cars and trains. This is an everyday ritual. Suddenly, my husband sees him poking at the floor and jumping back 3 feet along with the terrifying cry. He runs to my husband and leaps onto his lap, still crying frantically.
After a minute or so, he gets down with caution, proceeds to the area and starts scratching at a particular spot on the floor and starts to lick the floor!!
Later that evening, my husband and I came into the room where the incident happened, only to find his dinosaurs lined up and on guard. I accidentally knocked the T-Rex over. The following morning when I came back into the room, T-Rex had been stood back up and all dinosaurs in their proper stance.

 

Longarm Quilter’s & Charges

For those that do not know what a longarm sewing machine is, it is a sewing machine longarmthat is used to sew together a quilt top, quilt batting and quilt backing into a finished quilt. The frame typically ranges from 10 – 14 feet in length.
I’ve seen it stated multiple times that what a longarm quilter charges reflect their abilities. Nothing could be further from the truth!
The amount a person charge does not speak for their abilities. Just because one longarm quilter doesn’t charge $0.015-$0.03 per square inch for edge to edge doesn’t mean their work is bad.

With that being said you should always ask questions:
1. Always ask for past work photos.
2. Ask if there are any additional charges.
3. Ask for the estimated time for getting your quilt done.
4. Ask how long they have been quilting.
5. Ask for an estimate before the quilting starts.
6. What quality of thread they use.
7. Do they provide batting and if so what kind. (Most do not)

I would say most of all longarm quilters’ take pride in their work. No matter what they charge in the end.

So many factors go into pricing.
1. Are they computerized or do they hand guide pantos/ freestyle?
2. Custom or not?
3. Location?
4. The size of the machine and frame. So it may not be able to do large quilts?
5. Threads used? (Most use high quality but some do not.)
6. Is it a part-time extra money job or full-time job only income?

Here’s an example, If the charge was $0.02 an sq inch for all over, edge to edge quilting, and the customer brings me a queen size quilt that measures 90×100, the total sq inch is 9,000

90″x100″=9,000 sq inches x $0.02/sq inch= $180 labor charge

Now you’ll have to factor in the cost of electricity, cost of patterns, cost of the machine, cost of maintenance, the cost of space in their home, cost of business insurance, health insurance, cost of a website, flyers, advertising, accounting software, the time it takes to input everything, and the time it takes to determine what quilting designs should be used.

So please if anyone tries to convince you otherwise please ask questions. There are 1,000’s of us who would be happy to give you an honest answer and not a sales pitch.

Happy quilting everyone!

Cluster of a Mess!

My fabric collection is HUGE … I have fabric stashed everywhere – dressers,  baskets and a LOT of boxes full!  Buying fabric is as addicting to me as my nightshirt collection is – not that there is a shortage of nightshirts, but for some reason, I have to buy tons of them!comic book boards

I’ve gotten fed up with taking everything out of a box or basket just to go searching for fabric that I thought was in there but wasn’t … Grr!  I stumbled upon a site that sold pre-cut fabric organizers out of corrugated plastic sheets.  It was really exactly what my subconscious has been searching for.  They are perfect in every way, but the price!

Wouldn’t say I’m cheap, but I’m frugal and if I can make something for less money I’m all for it.  When the fabric organizers are $1.95 /large x’s about 50 million yards of fabric it’s going to add up very fast … I know! I know! That’s a bit of an exaggeration; but at times it really feels like I have that much, especially when I’m searching for that special fabric.

IMG_6414

However, I started to use comic book boards to wrap my fabric around – What a brilliant idea! Everything is organized and tidy – Just the way I like it to be.