Our Favorite Sensory Diet Ingredients

Around age 2 both girls were diagnosed with Sensory Processing Dysfunction. Abby has always been a sensory seeker of the highest proportion. We always thought that as time went on it might be reduced, but that has not been the case. On the other hand, Grace tended to be more of a sensory avoider. As she has gotten older she does MUCH better with texture and even crazes it to some degree. 

What has always astonished me is how much better both girls function when we pay attention to their sensory diet needs. I thought I would put together a list of some of the items that are must haves on our sensory diet list. 

The Gymnic Movin' Sit Inflatable Seat: This little powerhouse has been sat upon by almost every hynie in the house. I must admit on particularly hyper days even I can be found swaying to and from to keep my attention level up. Abby get a lot of input from the dimples, but Grace and I enjoy the ability to move while you sit. Costs just over $30 so a great buy. 

 

Z-Vibe: Although the Z vibe finally died in our house after 6 years of use, it is a great tool for kids whose sensory needs involve the mouth. For us, that was both girls. Abby used to stuff her mouth and her OT suggested that we use this to give her input before she ate. It did a great job at minimizing stuffing and creating feeding awareness. Grace avoided certain textures so we tried this before she ate things she usually avoided. It helped us get her to eat yogurt and smoothies, but she still won't eat anything with lumps like oatmeal. 

 

Chewy Necklaces: At nine years old I still often find Abby wearing one of her many chewy necklaces. They beat the heck out of fingernails or sleeves for kids who look for input by chewing.  

Chewy Tubes: In that same vain we have an entire bin (I kid you not, a bin) of various chewy tubes that have been collected over the years. Abby's absolute favorite are the P's and Q's, probably because I can attach them to a necklace.  They are inexperience and can be thrown in the dishwasher to keep clean. 

Raising A Sensory Smart Child: This book was just about heaven-sent to a Mom who had never heard of SPD before the day both of her kids were diagnosed with it. There is a book and a cool guide to activities, both of which I loved and used frequently. I highly recommend you invest in both!

Weighted Blankets: Abby has always been a terrible sleeper. When her OT suggested a weighted blanket it almost sounded like a form of child abuse. Little did I know this well known sensory secret is a must for sensory kids who struggle to sleep. Both girls used them from about 3 until 6. Abby continued to use hers until she outgrew it last year. That being said I am considering buying a larger one for her to use now. 

Please excuse the shameless Amazon plug here, but that is truly where we ordered all of our sensory products. There are some great companies out there selling awesome products but when buying for two kids with two different kinds of needs Amazon fit our budget. 

New Jersey GFAF Expo

I was lucky enough to be chosen as an official expo blogger for the New Jersey Gluten and Allergen Free Expo. This is a meeting place for companies to display the many wonderful options available for people living with different food allergies.

As most of you know this is a topic near and dear to my heart. When Abby was first introduced to dairy milk and eggs as an infant she had an immediate and frightening response. As it turned out she has an anaphylactic allergy to ingestion or touch of eggs, cow's milk, tree nuts, agave and blueberries. We spent years strictly avoiding these foods and being very cautious about what we fed her. Since that time she has food challenged a few tree nuts and blueberries so these are all on her safe list. 

In addition to Abby's allergies, my niece Genna had a severe allergy to peanuts and my nephew Jordan (who linked me us with GFAF) has a severe intolerance to dairy and gluten. Life with food allergies and intolerances are no fun at all!

So, I ask you to join us at the NJ GFAF expo in Secaucus, NJ on September 6 & 7th. The expo is at the Meadowlands Expo Center and there will be a wide variety of sponsors and presenters in attendance. We are all very excited to be a part of it and I can't wait to share with you!

If you are able to attend, please leave me a comment below and I will be choosing one lucky winner of four free tickets (using a random number generator) on August 1st!

If you click the banner below you will be taken to the link for discounted tickets.

We hope to see you there!!

Another Day at the Hospital

No matter how many times you do it, days at the hospital are completely draining. Today Abby had her oral surgery. It doesn't sound like much... oral surgery. But when you combine a 6:30 call time, a dose of versed, general anesthesia, six fillings, three crowns, TWO tooth extractions (they pulled a wiggly one), stitches and a drained abscess it makes for a lot of work.

As usual she was a trooper. She never complained about getting up early this morning or being hungry. She was a trooper waiting for her surgery to start.

She was a complete ham when they gave her the versed.

Then off she went. That's the part I hate the most. I HATE saying goodbye.

I hate watching her get wheeled away for what feels like the millionth time. You can't explain to people who have never been there the utter helplessness that comes with watching your child get wheeled into an operating or testing room (over and over). It sucks!

The surgery took longer than expected, almost two hours.

She took a while to wake up but was much less weepy than normal.

We stayed in recovery for almost three hours before she was ready to go.

Now she is home and doing great. Soft foods and no walking for 24 hours. She is a fall risk without anesthesia so you can imagine what the does to her system.

Abby's Season Ender

This past weekend was the girls final meet of the track season. It is a little bittersweet for us because we truly do love track, the people and the "family" we have found there. It is also truly amazing to watch our girls thrive in this sport. Abby ran on Friday night in the non-Championship meet. She didn't qualify for the championship so she got to run in as many events as she wanted in the final meet.

Her first race of the night was the 100 meter race. She looked adorable as always as she lined up.

She was in the last heat of her age group so we thought she might have a shot at the top five. 

Well, can I tell you our complete shock when she ran the best race of her life and got FIRST PLACE!

We was absolutely elated. I watched the race from the starting line and it took everything in my body not to sob like a baby when I walked to greet her at the finish line. 

The same little girl who needed a walker and a helmet and braces. The same little girl that I laid awake in bed wondering if she would ever walk. SHE won first place!!!

A new friend for Abby

A few weeks ago we got the call that we were hesitently waiting for. After out last experience with a companion dog we were a little nervous about trying it again. This time we asked a lot more questions and took our time with the process. I am happy to say that when we met our new friend, Wisdom, it was clear that he was a good fit for our family.

We went to "meet" him, not sure whether he would be coming home with us.

We spent a few hours getting to know him, asking questions, letting the kids play with him and making sure he was the right dog. He was. 

As soon as he hopped into the back of the van it was clear he was our dog. 

So now we have Wisdom (otherwise known as Wizzum by Jack, Whizzy by Grace and Wizz by Abby). 

He is a two year old golden lab. He is very lazy and likes to snuggle. 

Grace and Whizzy are in love. They play. She grooms him and walks him and lays with him. Abby has been a little slower to warm up. While the dog is a companion for her she is more aloof. It is a work in progress. 

Thankfully he is a really patient pup. 

The whirling dirvish

Part of the condition that Abby has (Rhombencephalosynapsis) causes her to spin her body on a regular basis. For years we wondered whether putting her in a ballet class would help or hurt her need to spin. Would it make her want to spin more? Would she fall? Would she be able to keep up in a regular ballet class?

We decided that with all of the progress she has made in PT over the past year it was time to give it a try. So for Christmas we signed her up for a class through the township, bought her ballet shoes and a leotard.

Her first class was on Wednesday and she was SO excited. When the time came to dance she got a little nervous. I know inside she gets anxious about being able to keep up with the other kids.

Thankfully she has a wonderful and patient teacher who knows that she might do things just a smidge different but she CAN do them. 

She tapped and tapped for the first half of the class. I think all the tapping gave her awesome input. 

 

The second half of the class was ballet. She looked like she was born to be a ballerina. 

After class she came home and taught her siblings all her positions. 

Funny thing... she has "recruited" a certain twin sister to join the class. Sshhh! Don't tell anyone. The tomboy in her doesn't want ANYONE to know. ;D

She's OK!

We met with Abby's ophthalmologist today and the news was very good. He was very satisfied saying that while her optic nerve is large it is NOT swollen or irregular. He still sees anomalies because of her Rhombencephalosynapsis but nothing new.

His only concern was with her overall lack of growth. He seems to feel that a growth hormone deficiency is likely. With midline brain issues pituitary involvement is likely. So we will go back to endo and have her tested to see what's going on.

All in all... I'm taking this as good news!

Waiting

There isn't much to report here about Abby. We feel like we have been playing this waiting game for so long it exhausts us. Some waiting is fine but this kind of waiting just hurts. Its scary. Is something wrong? Does something need to be done right away? You second guess every "off" day, every upset stomach, every headache.

Friday we see her eye surgeon. If he has any suspicions he will likely call in her neuro-ophthalmology. That being said we're not sure if that will yield any direct answers or if more tests need to be done.

I'm grateful the MRI is already done because that would have been the first test ordered. So for now we count down to Friday and keep waiting.

Keepin it interesting

I took abs for what I thought was her "everything's fine" appointment today. It looked like all was fine. The doc seemed fairly pleased with the minimal change on her scan. 

We talked for almost an hour about her rhombencephalosynapsis and what it meant for her. Then she got to the physical exam. When she looked in her eyes she looked too long. She glossed over it and said she wante us to see her ophthalmologist ASAP. She saw swelling in the back of her eyes. 

She suspects a papilladema which is swelling in the optic disks caused by intracranial pressure. So now we have to go to her eye doc next Friday to start figuring out what it is and why. 

So I guess the roller coaster wants to take us for at least one more spin. 

How many tickets for the roller coaster?

Last week was such a roller coaster we are still trying to recover from the ups and downs. We had the MRI and she did really well. By Thursday afternoon she was pretty much back to normal. She woke up Friday throwing up and really nauseous. When I called the pediatrician for the results of the scan I mentioned the vomiting. The combination of the brain issues and the vomiting put them into panic mode. I was thoroughly irritated. They wanted us to rush her to the CHOP ER right away. I was politely trying to explain that if we rushed her to the ER every time she was dizzy or nauseous we'd be in the hospital weekly. I realize that they feel overwhelmed by her rare diagnosis but it was a little frustrating.

What thoroughly frustrated me is that the nurse was telling me that they did not have the results, they were never sent to them. I explained that since they were the office writing the script it had to be there. She told me (not so politely) that in the time it took her to track the results down and have a doc look at them I would have wasted the day and put my kid at risk. The lack of empathy or politeness just set me off. I was nice enough but had had enough. I asked her to please get the results, show them to the doc and call me back. Once glance at the scan would tell them whether we needed to rush or not.

I decided to call Abby's neurogeneticist at CHOP and see if he would be kind enough to take a glance at the results. The staff there was great and put in calls to a triage nurse AND the neuro geneticist. The neuro called me back within two hours. (The nurse at the pediatrician's office DID call back within half an hour to say they got the results... a little quicker than half the day I guess). The wonderful news was that the change on her scan since the last scan was minimal. We will have to talk specifics with the new neurologist tomorrow but overall there was nothing emergent. (Thank God!!!)

I didn't hear back from the pediatrician until 6 o'clock and she had NO IDEA what she was talking about. Obviously she was not comfortable dealing with the diagnosis.

So, it was a whirlwind. It was a long, scary, stressful, anxiety provoking week. I am not sure how we got all the way through it. So tomorrow we will see the new neuro and get the ins and outs of the scan. It sounds like nothing will require surgery at this point (again, thank God!) so we are very, very thankful!

How does that brain look?

Unfortunately we will not know the answer to that question until at least tomorrow morning. The MRI is done and the report will go to her pediatrician tomorrow. The problem is that since her neuro didn't order the test I am not sure how much of a basis for comparison her pediatrician is going to have. So it might not be until next Tuesday when we see the new neurologist that we get any real answers.



The scan itself was fine. We had to be there by 7 so it was a very early start to our day.



Thankfully Abby doesn't mind getting up early. She was a trooper.



She had the nurses in stitches before she even got her first dose of the giggle juice.



We got slowed down because they had a mechanical problem but she was back in the scanner by 9:30. Lucky for me my Mom was free to come keep me company during the wait.



Apparently she tried to sit up during the scan so she had to have a second dose of the deep sedation meds.  It took her a while to wake up and she was incredibly groggy and not very happy.



She spent about an hour crying and sobbing about feeling tired and loopy.



She couldn't walk most of yesterday (without falling) so we had to be on top of her. She was also incredibly emotional. Thankfully she spent most of the day laying around and was in bed by 7:30. Today she is a lot better although her balance is still off. The doctor urged us to keep her home an extra day so we did. Her muscles are crampy and her tummy is still a little off but she's tough.



So now we wait. Keep praying!

Scan tomorrow

Tomorrow is Abby's MRI. We are praying for good news and nothing surgical. We know it's a possibility so we're trying to he optimistic but also realistic. Just praying we can get fast results and don't have to go on a man hunt to get someone to give us the results.

Keep her in your prayers!

Appointments and more appointments

It looks like we are back on this path, at least for the time being. We have managed to schedule her sedated MRI for the 2nd of October. We don't love waiting that long but it was the first available. Six days later she'll see her new neurologist at CHOP. (We have a neuro through neurogenetics but want someone who is overseeing her more regularly.) Then on the 11th she'll see her ophthalmologist to see what's going on behind that eye. I scheduled that one last since the neuro picture might explain the eye picture which would cut out an appointment.

So now we wait (and pray and pace). Hopefully we will have swift answers. We are so hopeful to continue avoiding surgery and shunts. We knew this day might come but nothing can prepare you for it.

Allergy testing

Two weeks ago the girls had their bi annual visit to the allergist. It's one of the many specialist visits we like to knock off during the summer months. Everything with Grace looked good. We have to start her flovent for the remained of the fall. She flares (her asthma) horribly during the spring and fall.

Abby had skin testing and unfortunately her egg and milk reactions were big and ugly again. So no progress there. :( Her tree nut testing was all over the place. Ones that were clear last time showed allergies and vice versa. She was officially cleared for almonds and hazelnut. The pecan testing showed a mild positive reaction but the allergist decided he was ready to do a food challenge for pecans. We lucked out and got a cancellation spot. (The waiting list is 2-3 months long.)

So we had to be at the hospital at 7:15 am last Tuesday morning. She couldn't eat anything but clear liquids after midnight so she was starving but in good spirits.

 *Breakfast of champions

A food challenge is done at the main hospital on the day medical floor. They have to be under strict supervision in case of a severe allergy. They mix the allergen into something they can eat in increasing doses. We started with 1/8 tsp of ground pecans. The dose doubles every 20 minutes until she either shows symptoms or eats a full ounce with no reaction.

All in all she did great.

 *Abby's digs

The whole test took almost 6 hours so it was an incredibly long day.

 *Mine :(

We had to stop the challenge one time for mild symptoms but she was able to finish. What I didn't realize is that a skin test will always be the last to show up. So even though her tongue and mouth itched during the test she was able to continue. They are looking for a systemic allergy where either she has hives or is sick to her stomach. She did have stomach pains so when she has pecans over the next few weeks we need to keep an eye on her.

The other odd thing is that if you pass a food challenge you are asked to eat that food 2-3 times a week to continue building and maintaining a tolerance to that food. It doesn't sound like much but it might be a pain to work it in every week. We will do our best.

So next will be blueberry. I am pretty sure she'll fail that one but her allergist is adamant we test her. So for now we wait for a spot. 

Dear Abby's Teacher

Dear Abby's Teacher,

There are so many things I want to tell you. There are so many things I want you to know about my girl. You see, you will have her in your care for as many waking hours as I do. SO because of that I want you to know her and love her and care for her just like me. I know you can't but I want you to. So here is what I want you to know.

• My girl is a clutz. She falls A LOT. But the weird thing is she will look sturdy on her feet and then go ass over tea kettles. Be on the lookout for that. 
• When she falls she doesn't like to be coddled. A hug or a squeeze and she's good to go. 
• She sings... A LOT. It sounds cute at first but then it gets very annoying. Just humor her. She may be on broadway someday. 
• She runs hot. She isn't necessarily feverish. She just runs hotter than most. 
• Yes, she has a bald patch on her head. And NO she doesn't want to talk about it. 
• If you feed her milk or eggs or blueberries or tree nuts or agave she might die. You think you'll remember but for one minute you might forget. DON'T FORGET. 
• Sister needs to eat. All day. Every day. She metabolizes her food so fast that she can't go more than two or three hours without eating. 
• While she knows she has Rhombencephalosynapsis she will not want it to be a topic of conversation. 
• Although she is quite familiar with the nurse's office she will avoid it like the plague. Make sure she isn't keeping a bloody knee or egg on her head a secret. She will and just deal with it later. 
• While the school makes her wear that helmet during recess she probably doesn't need it. The moment you think she doesn't let's start lobbying for that together. 
• Most of all... take care of my baby. This is the kid who they didn't think would live. And when she did they said would never walk or talk. Although she is a freaking rock star she is still my baby. She still needs her hand held and she still gets tired easy. When she's tired she will fall like a toddler learning to walk. Protect her. Do it quietly but protect her. She is my heart. 

Gratefully,

Abby's Mommy

Just walkin'

We attempted to have a yard sale last weekend and it was a complete and utter bust. In the midst of the sale Abs helped her brother into his car and just took him for a walk around the court. When I asked her what she was doing, (as you see, our Abigail is not the most self-sufficient child) she responded "Just walkin". So they walked...