Oct 2011 - EXTRA HELP!!! Brian Lounsberry, Stefanie Heaser, Carrie Demmon

In October we hired extra-help to help us teach our little one, Aliyah. (Brian started in Aug 2011) It hurts me when I try to teach her how to play with her toys because she would not understand how to. I just want to play with her and not worry about her differences and compare her with other children her age. Which is why we wanted extra help since sometimes I found myself crying because my little one at age 2 wouldn't scribble on paper for me or knew how dolls were played .... back in Nov.2011

We have interviewed aggressively and found great people to be part of Aliyah's life.

Carrie

"I met Aliyah almost a month ago. When I first met her, she cried and was distant. She was close to her mom. When I worked with her for the first time, I took her to the playground. Lizette walked with us to the playground. Once Lizette left, Aliyah got upset. She resisted me and wasn’t interested in the playground. She cried and tried to leave the playground. I was resilient, and I didn’t give up. I’ve continued working with Aliyah and each time the experience gets better. There are still moments when she cries or wants to play with her mom, Aliyah knows who I am and enjoys playing with me. She has come to me with her arms raised and smiles and laughs. We have had wonderful moments at the playground, and I’ve even seen growth in her understanding. She is beginning to learn to sit down at the top of a slide. I love to watch her explore when she sees a dog, cat, or new toy. I’ve heard Aliyah use the sounds p, b, and she has even expressed the sound ‘t’. She also likes to click her tongue. I love singing with Aliyah, and I am enjoying being a part of her life. It is challenging to work with her which makes me appreciate the work Lizette and Sean do each and every day." 10/23/11

Brian

"When we started (mid Aug) she wanted to communicate but couldn't find a way, also wanted to play with peers an could't and making sounds was about 3-5 sounds. First thing I did was see her in her home setting, she loves books and toys with sounds/music so I started a step ahead of myself. ABA No tear learning which is immitation to learn on a baseline then after she pass trialed in then mastered at a 90% rate on 3 separate sessions. But 1st we had learn immitation play.

So I spent a week on just simple stuff: touch nose, tummy, eye, tounge, ear, hair. had to oversome putting fingers in her mounth. So we started on her favorite toy dolls and then after a week she had dropped 90% of fingers in her mouth. Then started to do immitation play like on top, under, in, out on a toy then mimic the sounds out of stuff mouth, takes about 3 separate sessions to say the sound.

Sounds she can now say:

ah, bah, cah, duh, fff, ga, la, ll, ma, mm, pa, sss, wah, and the top of mouth "click sound"

Goals we are working on: basic 2 yr old

2 word communication- its verbal prompted better when we started with han over hand everything. ex. I'd stop music- che say more music, signed after learning the sign n making it to the best of her abilities.Full moition with gross motor and fine motor. ex. right hand zips up, left hand zips down. don't know why it happens.

Also working on teeth sound like ta, and some tough ones like zah and close ones to ga, like ja, ya, and also trying to make an O sound with an O movement. We started thursday 9/15 signing mom by placing her thumb to touch her chin and it took 5 sessions to touch her chin with her thumb st 50% hand over hand. But she smiles when is a sign mom because she wants to learn it. Also, she wants to play with her baby brother, been working on nice touch with 1 or 2 fingers and no pinching with anyone else too. Also learned to wave properly and blow a kiss with ma sound. " 9/21/11

Stefanie

I started working with Aliyah in the Fall of 2011 not knowing exactly what I was getting in to. This is what I observed: a little girl who did not know how to play with dolls, could not put her jacket, hat, socks and shoes on, did not verbalize, could not identify a puppy, a cat, or a fish, did not use sign language, and did not know how to jump into a swimming pool. At this point she was still eating solid food, but her seizure disorder was getting worse.

Today I observe the exact opposite. Aliyah is the most resilient little two and a half year old I have ever had the pleasure to work with. This is what I observe now, just 4 months after I started working with her; Aliyah can say "mama" and "papa." Not only can she identify cat, dog, and fish, she can actually say "puppy." Her verbalizations have increased from just a few a day to constantly talking and making sounds. When we are ready to leave home, she sticks out her feet to put her shoes on and she puts her own coat, hat, and mittens on. Aliyah went from hitting her baby doll to feeding, burping, and rocking it. When Aliyah wants more of something or simply wants to tell you that she's happy, she uses sign language to communicate. She even jumps into the pool! She's two and a half! It's incredible! It's heartbreaking to see her condition get worse, but it's absolutely amazing to see her achieve so many things people thought she would never be able to. The possibilities are endless for this little girl and I do not doubt that she will achieve them all.

Nov 9.2011 APPOINTMENT AT JOHNS HOPKINS!!!!

AFTER CALLING WEEK AFTER WEEK, WELL MORE LIKE EVERY DAY, WE FINALLY HAD AN APPOINTMENT ON Nov. 9th.2011. FINALLY... FINALLY.... THE SQUEAKY WHEEL ACTUALLY WORKS!!!! NO KIDDING!!!!

I knew we were moving to the east coast and was in fear of traveling to a new setting where we would need to start from scratch especially now that I was starting to trust Dr.Joshi with Aliyah.

We FAXED EVERYTHING... LITERALLY EVERYTHING.. FROM ALL FOUR HOSPITAL THAT Aliyah HAS BEEN HOSPITALIZED IN AND HER PEDIATRIC CLINIC.

WE GAVE THEM EVERYTHING.... ALL of her video-EEGs, MRI, blood work results, IQ testing, reports from her occupational - physical - speech therapists. Anything that had to do with my baby I gave it to them.

The social worker from Johns Hopkins gave us flight vouchers and a free place to stay called "Believe in Tomorrow's Children's House" (Very similar to the Ronald McDonald House).

I cannot tell you the high hopes I had before coming to Maryland. Hoping Dr.Kossoff would tell us Aliyah's condition is "treatable" meaning manageable......... well more like fixable. Unfortunately that was not the case- not at all.

Basically he looked over Aliyah's history and told us we are doing everything we should be doing and is happy with the work Dr.Joshi is doing. And told us we were very fortunate with the work Dr.Alsayouth did on my baby when she was first diagnosed. He said we were fortunate we fought aggressively with the medications from the beginning.

He told us to go up on the Keto-diet to the 4 to 1 ratio. He told us NOT to do Nitrazapam and mentioned how most likely Vigabratin will not do much for her because of her age being 2. He told us we could go back to topomax or try depakote. That was basically our conversation. :( Nothing more we could do.

He let us know he has patients that are seizure free but have not progressed cognitively. I told him I want to move to Maryland and not to New Jersey because of his expertise. But he let me know there isn't much for them to do for Aliyah... again and again. I do believe Aliyah will be in great hands with Dr.Kossoff! As Aliyah was in GREAT CARE under Dr.Joshi supervision and guidance.

I didn't care we were still going to move. Just in case Aliyah's condition would be a life long one. I needed Aliyah to be seen by a highly recognized institution. Everyone is always telling me you can't go wrong with John's Hopkins. :)

I AM GOING TO DO THIS MOVE FOR MY DAUGHTER!!!!! WHO KNOWS WHAT HER INFANTILE SPASMS MAY LEAD TO!!!!!

I am not going to deny. I was devastated after the appointment . I felt that some well most of my HOPE was taken from me. But I was going to keep on being optimistic. Hopefully Aliyah's IS miraculously goes away... I don't know at that point I was leading more towards God and less towards her neurologists.

I really wanted this appt. so it could have been an easier transition from Dr.Joshi to Dr.Kossoff. Now we know who he is and he knows who we are once we established residency in Maryland.

Below is Aliyah's future neurologist Dr.Eric Kossoff once we move to Marlyland.

NOV. 4, 2011 AS A MOM I FEEL USELESS....

I am so close to finishing my degree in Microbiology, and plan on moving from Iowa to Maryland so that Aliyah can be near Johns Hopkins and be closer to my family because we are in need of emotional support through this rough time. My mother- I feel is the one person who feels my pain, though my husband shows it in different ways. I need someone to help me get through this. My daughter's life has changed.

Some one once told me to lower my expectations for Aliyah, at the time I was furious and within myself was like: HOW DARE SHE!!!! WHO DO YOU THINK YOU ARE TO TALK TO ME LIKE THAT? I AM THE MOTHER OF THIS BEAUTIFUL CHILD. I WILL NEVER GIVE UP HOPE. I HAVE HOPE ALIYAH CAN OVERCOME THIS AND BEAT THIS. I BELIEVE IN THE LORD'S POWER. HE MAY "CURE" ALIYAH AND REMOVE THIS ENTIRE NIGHTMARE FROM OUR FAMILY.

From then on I knew I needed to move to the east coast to be closer to my mother so that she can help me keep my sanity!!! GOD, PLEASE HELP ME! I know I have been in the dark and have deeply envied other parents and their joyful times. Why Aliyah? Why? Why any child? Why? I hate it when I find myself asking that stupid question to which I will never find out.

I feel useless, a wreck, weak, beaten down, and shaken down. But Aliyah cries when I cry. She loves to cuddle with me. My little one is worth all of this pain and so much more. I just wish I could take her spot. I would do anything... anything for her. All I want is for her to get better! Damn I hate this WHY WHY WHY!!!

Ever since I was a child and played with my dolls I planned out my "future" daughter's life(now Aliyah). And now people are making me resign and rethink a different plan for Aliyah.... not this year... and possibly not next year.... When will we heal as a family? When will this pain ever end...?

I had no idea how much a mother could possibly love her children..... I am blessed to be the mother of my children~ Aliyah and Bruce

Aliyah with her feeding tube

Poor baby, she had no idea why she had a tube hanging out of her belly, she knew if she pulled it pain would struck.

At the hospital they taught us how to feed her, "gravity feeding", meaning no apparatus that calculated/monitored her feedings. The hospital helped us locate an agency that supplied the syringes and tubes.

Half of her meals were formula and half were her oral keto meals. The nurse told us we could tape her tube to her belly but it left marks and messed with Aliyah;s delicate skin, so now I attach it to her diaper and most of the time she wears onsies so her tube won't be in the air.

Her little brother, Bruce who at the time in november was 7 months, found her tube interesting and always wanted to pull on it so I would make sure he never had a hold of it.

I have hired someone to give her swimming lessons. We had to wait 2weeks after surgery until Aliyah's tube can be submerged in water. She loves the pool!!! Eventhough it hurts me to see her have the feeding tube at least I can say I am doing everything in my power to see Aliyah is getting the best treatment out there!

Dr. Joshi wanted us to stay in the 3.5 ratio until further notice during the time of her tube placement.

FEEDING-TUBE....NOV.2.2011

Yes, we were going back and forth whether or not to go with the feeding tube. Aliyah was eating again. She was no longer throwing up and enjoying what she was taking in. So we decided to cancel the surgery appointment for the G-Tube placement... But soon enough after 1 week of eating her meals she began to throw up. The kept on telling us it was her body rejecting it.

Dr. Joshi called and told us it was either putting in the G-tube or no diet and going with a new treatment of Vigabratin. We believed in the diet so much we agreed to go with the feeding tube just so Aliyah could stay with the diet.

On Nov.2.11 Aliyah was under anesthesia to have her g-tube placed. When she woke up she was very irritable. Nothing calmed her down, she kept on wanting to hit her head.

When we were discharged half of her meals were solids and half of her meals was the Keto Cal formula. We no longer had to fight her to drink her cream or medicine. All liquids went through her tube.

HOSPITALIZED AGAIN! Sept 26-29th ... SHE CAN'T STOP VOMITING...

We could not stop her from vomiting now anything she had in came out immediately. EVEN WATER!!! I called her local ped. and they told me to call her neurologist, and they told us to drive to Iowa CIty ASAP!

Blood work showed she was too "ketotic", to help her from throwing up they prescribed her strong anti-acid medication and continued using the increased dosage of Poly k-crystals. She was under IV and did not eat for 2 days, they prepared the KetoCal formula but she hated the taste.

On the second day she appeared to be hungry, so we gave her a little bit of hotdog, she ate it so fast but her body still threw it back up she could not control this. It was scaring her.

When I told them I have been syringing her cream Dr.Joshi was upset and said I was regressing her learning in eating. But I rebuttal by saying it was the only way I can get her to drink/taste the cream.

She came back and advised me to deeply consider a G-TUBE.

NO! I DID NOT WANT MY DAUGHTER TO HAVE SOMETHING MORE TO SET HER ASIDE FROM THE "NORMAL" CHILDREN. PLUS I HATE THE IDEA OF SCARS ON MY BABY!!!!

But since she couldn't intake any of her food I had no option but to accept it. Since there was no slot for an operation on Aliyah's G-tube they scheduled us for next week to have the G-tube implanted on my baby.

I felt useless.... my poor baby is going through so much.

Even though she was going though so much this was around the time she was calling for me... calling me.. "mama" ...

I may be smiling in this picture but believe me I feel desperate and unstable.... But around Aliyah, I have to put my best face out for her. 

Blood clots..... Sept 23.2011

Aliyah has received her flu shot. After being one week and a half of being seizure-free, 15 minutes after her influenza shot she began to seize again, first time in the glorious 1.5 weeks of being seizure free.

Also she began to throw up her meals. It first started up she was gagging. She then did not want to eat anymore. Yes. I did "force" fed my daughter. I needed the diet to be just right!!!! :(

Damn the hot dogs and damn the cream. :( I loved the results it gave Aliyah but she was throwing u all of her meals for 3 days straight. And to top everything else off we found little blood clots in her urine. I called the doctor's office, of course the nurse told me to keep a close watch. Again another blood clot in her diaper. This time we rushed to the hospital.

There they took an x-ray which what the pediatric feared to have seen kidney stones. So then Aliyah was ambulanced from Mary Greeley to the University of Iowa Children's Hospital. They had put a bag to collect urine to collect sample, by the time we arrived about 1.5 hrs later, we saw another blood clot a little less than a quarter size.

They ran some blood work and checked to see if Aliyah had passed a kidney stone.

Urology and G.I. both came back and told me they saw nothing but Neurology told me they did see two small spots as did the pediatric back in our home town. But I went with the specialist had to say. What they did do for us was TOOK ALIYAH OFF OF TOPOMAX because it increasing her chances of developing more stones and INCREASING THE DOSE OF CITRAE POLY-K CRYSTALS since in her blood work and urine samples it showed Aliyah was losing much of her calcium intake out in her urine, increasing the dose will help in maintaining it in her body. We were then discharged, they told us not to push her eating. She did eat sometimes but I no longer force fed her because she would have thrown up.