A good week

We started out the week by heading to visit my mom at the hospital in Halifax. Mom has been going through a roller coaster ride through hell of her own when she was diagnosed with small cell lung cancer. The good news for mom is despite it having a very low positive outcome, she has caught it before it spread. That puts her in a better category and doctors are now doing all they can to abolish the nasty beast. I know she will beat it. My mom has a spirit unlike anyone I have ever met. She was just finishing her second round of chemo when we visited and she had the kids sitting up around her and trying on her new wig the hospital gave her and Meggie eating up her pudding. The girls adore their Nana. Their faces brighten and I never see Ava so engaged as when she sees both Nana and Grandpa. Earlier in the week we stopped by her empty house on the way back from an event and Ava looked around the room with a wry smile just waiting for Nana to jump out and say boo! Snuggle time with Nana will be at a minimum as she enters chemo and radiation because her immune system will be so low that a cold could really hurt her. And we all know how germ infested little kids are, I just hope that this time will pass quickly and by summer the cancer will be just a thing of the past.
Back at our hotel Ava started saying Mom! It was such a clear word while she irritably looked at me waiting to be picked up. She continued to say it all day every day since. Other words are starting to emerge in quick succession. The up word made a comeback a couple times. She used to say it all the time but quickly forgot. Until it became um and then uh. Now it is back to up or um but we treat it as up no matter how she says it. It will come. At a joint physio/OT/speech session Ava was across the small room with her physio and I called Hi Ava Hi across the room. She looked at me and said H-iiiii back! Whoa! She has been loving to walk while we hold her hands lately. She walks a bit drunk-like and wobbly but her feet are definitely going somewhere and she has learned to stop and switch directions and even step sideways to gain a better purchase. At her session I held her hands and walked her where she wanted to go. She walked up to her physiotherapist and as she reached for Ava, Ava shook her head no then turned around and walked to her other therapist, again she shook her head and continued around the room playing this game she had created. I loved it! A funny time this week for us was when we put her to bed but about an hour later she woke up and cried to get out. Usually I will just tuck her back in but instead picked her up to have some mommy and daddy time. The look on her face was pure joy as she realized she was free. We snuggled on the couch and she kept leaning her head on my shoulder then jumping up to look at me and then leaning again as if to show me she was giving me a hug. Something I have been trying to teach her as she usually doesn't like to be enclosed too much. A bit claustrophobic like her mama. It was very sweet and I could have done that all night. She started to rub her eyes and so I put her back down to her crib. Ten minutes later she complained again and when I opened the door she popped up from laying as quick as lightening and reached her arms up to me and shouted Mama! With this great smile like I was about to pull her out of bed to play again. So funny! But I shook my head no and she was fast asleep within minutes. What a great night!
We went to her neurologist appointment expecting to fight but deciding to wait to see what the neurologist would say first.
It took me almost a year to get a concrete alacrima diagnosis when all of the specialists were telling me that it was definitely not alacrima.
I sent off emails and follow up phone calls to her team of specialists asking what tests will be done now that we have this added clue. Her neuro nurse (we like to call nurse rachet) called and left a message saying that the neuro didn't plan to do anything but we would 'chat' about that at the next appointment.
I was seething. It sounded like the alacrima would not be explored and the word chat more than irritated me. We were talking about my child's life. We do not chat.
In the weeks leading up to the visit, I posed arguments in my dreams. How I would fight Ava's case.
All the steam went out of me when her neuro's first words were 'I am becoming an expert on alacrima'
Relief flooded me. I am not a neurologist. I can't do this on my own.
We worked through my list (maybe another day I will post my list of things that could fit, but probably don't).
He thought that we should have a barrium swallow test done. His thoughts were for Triple A or Allgrove. I know that is the only one that comes up when they input her symptoms in a computer. http://emedicine.medscape.com/article/919360-overview
She will also be getting a ACTH sensitivity test done. Both of these are important and have been on my list of tests for awhile now.
Another positive thing is that the neuro upon our request, is referring us to Toronto Sick Kids hospital! We will hopefully be going in the spring but that is just a guess. I am so excited. It is one of the world’s leading paediatric health-care institutions and is filled with specialists that aren't available in Halifax.
Developments and moving forward is good. It feels like it has been so long (a year!) since she had any diagnostic work done.
Ava was funny during the appointment. I put her on the floor and she immediately started to reach with her hands and drag her body across the floor (something she really has never done) and then grabbed on to a chair leg and pulled herself into a kneel. She beamed at the doc, looked at me and said Mom. I think she might have been showing off ;)

A great day

Yesterday, Ava made some great strides that just made me feel hopeful. We had a great day in total starting with a visit with early intervention. When Ava saw Teresa her whole face lit up. Since getting her glasses this is what she has done when meeting 'for the first time' familiar people in her life. Her glasses seem to be helping. The day she got them I was trying to figure out if she could indeed see better and held up a small block with a funny monkey face on it. Her eyes passed right over the block stopped then flew back to the picture and she let out a guffaw kind of chuckle. Teachers are definitely seeing an improvement as well. I think it is a move in the right direction but still think it could be stronger.
Yesterday she made me so proud. (But she does every day) She sat at her high chair and fed herself an entire meal of apple chunks and ham. She was a bit nervous of the apple and kept spitting it out until she learned to eat it with her front teeth (back ones are still emerging). She grabbed at that food and put it in her mouth like she was doing it all along. She still has to work on letting go of the food. It's like she's thinking it took me so long to learn to pick this up there's no way i'm letting it go :-} She still has a difficult time with the bottle while sitting but she picked up the bottle and jammed it toward her mouth and I propped her elbows on her tray and she happily drank away. I was so impressed when she finished her meal and realized I had only assisted on about three bites. Huge milestone.
Lately Ava has been slapping her knees or the table repeatedly. She usually does this when I try to give her food when she already has a mouth full to let me know 'hey mom i'm still eating'
I tried to teach her to slap her knees when she wants more.
That night when I lay her down and sang her a good ole rowdy drinking song to bed, she started laughing and slapping her knees. I kept singing. Suddenly she shook her head no. I stopped mid-verse. She laughed and looking at me teasingly slapped her knees and off I sang again. Laughingly we did this about ten times and I felt my spirit soar. She was teaching me a game and showing me the rules. It was amazing. It was awesome communicating. When I spoke with my mom later that night she said they were doing something similar where they were tapping their toes and playing and stopping the music while dancing Ava around the room last week. They stopped when the music stopped. I wonder if she was showing me that game? I hope to see this kind of behaviour continue. It's hard to know because sometimes we get a great milestone like that and won't see it again for months but hopefully if we keep at it and make it satisfying to her she will keep it up. What a great day for Ava!

Alacrima and cerebral vision impairment

Finally, after a year of telling her neurologists and opthomologists that Ava has alacrima, she has been officially diagnosed with alacrima as a symptom. Quite frankly it was getting a bit tiring saying a lack of tears with emotional crying every time I mentioned it as a symptom because if I used the A-word the neuros would shut me down saying that it wasn't that. They argued that Ava would have to have a complete lack of tears and since her eyes were shiny and bright then she does not have it.
For the last time docs, listen to the parents. They care a hell of a lot more than anyone and will put in the time and research.
So we spent four hours in the opthomologist in Halifax and she was completely brilliant. I was ready to fight when we walked in because thats all I seem to be doing lately.
I thought I'd let her speak what she thought first and everything she said sounded great. She did all sorts of tests including the Schirmer testing that despite her bawling the whole five minutes (poor girl) only collected a minimal amount of tears or liquid most of which the doc said was the solution that numbed the eye that she put in.
She said without a doubt Ava has a form of alacrima.
Now it is in the file and I will talk with her neuro and genetisist to see what further searching will be done.
The optho also looked at my list of theories of what could tie alacrima and delay and seizures to a diagnosis. I was able to find seven even if four of them were definite no's there were some that were possibilities.
The thing that i've always said was that with delay and seizures there are over 30,000 possibilities that Ava hasn't been checked for and probably won't be. If you add alacrima the number of possibilities can be counted on two hands. So I say why not check them and if there is no connection...fine. We move on. If there is then we know how best to treat if there is a treatment.
I know that if it connected to hormone then there are things that can be done. I think those should be checked first.
Second part of the optho appointment revealed that Ava has Cerebral Vision Impairment. It means basically that her eyes are fine but the message between her brain and eyes is mixed up. She may only be able to see certain things or what she sees may be altered. She was set up with glasses (boy did she look cute...pics to come) and later this year she will be upgraded to bifocals. We hope this will help her with her fine motor.
She will also be tested for the brain/vision accuity to map out her neuron pathways to see just how strong that pathway is.
And one more therapy will be added to the list. CVI is basically a type of blindness and so we will be taught how to make the best of interacting and intervention with Ava.

Development update

Ava is very close to crawling! She is now getting into four point crawl position without collapsing from weakness. Sometimes in this position she will rock back and forth. The other night she actually shuffled her knees and then walked her hands forward two steps! Go Ava go! I was so excited I yelled out and rather than falling she just sat up from four point and looked at me like, what do you want mom? She is now also starting to garble and in her garbles we hear more words emerging. Although she used to say up! quite clearly we don't hear that very often. I do hear mom (to both me and Craig) Craig heard her say chair when she was looking at the couch and the other week she reached toward our dog Princess and said a garbled doggy. She is bum shuffling around the room at times and experimenting with those movements. Also her hands which are the weakest part of her is getting some positive development. She can hold her bottle but if it drops she may try to get it but can't. We have been giving her cheesies by putting them in her hand and she will bring it to her mouth and eat them. Lately I've been holding them in front of her and she will look at it and grunt (wanting it) but won't reach for it. I tap the back of her hand with the cheesie and hold it up again and quick as lightning she will grab it and stuff it in her mouth. She even figured out how to get the small piece stuck in her fist into her mouth. She is very happy most of the day and only gets upset when she is tired or hungry or mad. Very appropriate emotionally. I am so proud of her and all her accomplishments. She herself is working very hard to get to the next level. She isn't giving up and we aren't either.

Ignorant people

We went in to Halifax for the second time in 7 days to bring Ava in for her special opthamology appointment. I had booked in 7 months ago and had specifically requested we see the senior opthamologist so that he could say one way or another whether Ava's lack of tears was neurological. Her neurologists are not looking into that as a symptom until the opthamologists say it is. So I had no problem making the extra 2.5 hour drive each way with two young children because it was important.
When we got there we were seen not by the senior opthamologist nor by the student but by a feaken optician or optics or whatever she was. I was so angry. I asked her what her education level was and if she was able to spot alacrima or closed tear ducts or anything. She said no. I asked what the difference was between going to the mall down our street vs the drive to Halifax. I stated how important it was that Ava was checked why she was not crying tears and if I wasn't mad already her response made me grit my teeth.
"Why do you care," she asked.
I care because it is an avenue that we have not explored in finding a cause of her seizures and delay.
"It's not like it's going to change anything," she said.
It will give us the best options for treatment, I gritted out.
"Who cares if your child has developmental delay, so they don't walk or crawl for a couple extra months, but if her vision is damaged it could be damaged for life."
Many responses came to me including a whole lot of profanity and name calling but I realized that this ignorant woman has no clue that many if not most children with this extent of delay never catch up. We wouldn't be worrying like crazy if it was only a temporary delay. And Ava is not a couple months behind but at least a year to 16 months behind. My breath would have been wasted on this stupid woman.
I don't mind when people say ignorant things who are willing to learn and know about Ava's issues. I needed to learn once too. But for a health professional at the IWK children's hospital? Really? She pissed me off. I still don't know what to do about this. Do I complain to the director? Do I leave it on the comment sheet? What do you do when you get substandard care for your child? What can you do?

an unexpected eeg

We got Ava up at 6 a.m. and dropped Meggie off at her grandparents and drove the 2.5 hour drive to the IWK. I was anticipating a great EEG because I had seen very few seizures (jerks) in Ava in months (two). When we got in they began to place the electrodes on her head and stuck them with a sticky gel. The eeg reading came on and I saw a nice steady stream of normal brain waves roll across the screen. No spikes. Ava drifted into sleep about 15 minutes in and suddenly her leg flew up in a jerk and her shoulders spasmed. I counted 10 obvious jerks and I couldn't believe what was happening. Why? In ketogenic mom mode I grabbed the paste they used on Ava's head and read the ingredients. Glycerin (a sugar alcohol) was third on the list. How does an EEG technician in a hospital that implements the ketogenic diet not realize this is not allowed and will throw a child out of ketosis? Now the results are all messed up and we will have to wait for three months to have a repeat eeg.
Grrrrrr.
In the new neurologist office we were slightly thrown and it took us a while to gather our thoughts to finally get out the questions that needed to be asked.
What will happen next?
He wasn't sure because every avenue had been checked in the regular process of finding a diagnosis.
So I said, fine now we know what she has is not regular, let's start going down alternative roads to figure this out.
We pressed the issue of Ava not having tears and asked the neuro to check of the possibilities of this as a clue.
He didn't seem to think that Ava showed any other symptoms (other than developmental delay and seizures) that would point to one of the possibilities where a lack of tears (alacrima) is a symptom. We thought he had brushed off the idea (disappointingly) but then near the end of the visit he said thoughtfully, how long has Ava not cried tears (since birth). Hopefully this means he is now thinking about it. Again he is mainly a researcher so that is why we wanted him, we felt he would be willing to look outside of the box in order to find a solution to the problem.
Time will tell.
He had a few different opinions than our old neuro (who we liked but needed a different opinion).
When I asked him if where he thought Ava was developmentally (mild, moderate, severe, profound) he said that when Ava first came in she was definitely severe (what her old neuro said) but watching her now he would say moderate. This was parallel to what her recent developmental tests have shown. That she has jumped a category in development from 3 per cent to 7 per cent (as compared to the rest of the population her age.) I hoped that this jump would become a trend. Most likely it is a jump because of better seizure control.
I asked the neuro why Ava was most responsive, alert, imitating and engaging the first week we initiated the diet as compared to later. He thought that maybe it was because she was on a combo of drugs and diet.
It is something to think about. Maybe going back on Depakote for maybe three months alongside the diet to see if there are greater improvements in her development. If there is we stick to it, if there is not we wean.
He also thought that the seizures were causing delay. Something her old neuro said the complete opposite. I hope he is right,at least that is something we can work with.
He was very positive about Ava's development. He said she is definitely moving forward. He said that at least she has not stopped or worse gone backwards. He said that it was very encouraging that she seemed to want to move on to the next step and was eager to try.

All in all it was a long and confusing day full of good and bad. We figured Ava would be beat by the end of five hours total in the car but driving up our street Craig shouted out to a neighbour Moody! he yelled. Ava thought this funny and laughed. As we drove along Craig would repeat the yell to Ava's histarics as she would dissolve into giggles and look up in anticipation for Craig to yell out again. She then stayed up till 10:30 full of laughter and movement. She was hurling herself across our bed from sitting to all fours to laying with such speed and laughter as Meg played peekaboo with her that by the time I put her to bed she was covered in sweat and still quietly giggling to herself. She blows me away sometimes.

New neurologist

We are going to Halifax tomorrow to see the new neurologist. I hope he is who I think he is. When we were in the hospital for a week initiating the diet every day a dozen neurologists would come in on their rounds to say good morning (procedure). Thinking to at least make use of this quick visit I would research and write down possibilities on the huge white board as well as any questions that might pop up. Eventually when the neuros would walk into our room the would look up at the board instead of us and rule out all my suggestions of what Ava could have. But they all gave me the impression they just wanted to leave. Plenty of patients to see. The only exception was one neurologist. When Ava got a rash we buzzed the nurse to see why. She paged the neurologist on call but told us because it was late he wouldn't come till the morning. But he did (10:30 p.m.) He sat on the edge of the bed and checked over Ava and immediately said it was just contact dermititis and would be gone probably by the next day. Then he kind of tilted his head and went hmmmm, what could it be? It was the first time i'd seen an interest to Ava's puzzle (one that I could see outwardly). He then said that not all children fit neatly in a box for diagnosis and I knew this was the doctor I wanted treating Ava. I hope that he is able to shed more light and possibly find a diagnosis. He is also a researcher so i'm hoping this puzzle of seizures, delay and lack of tears will appeal to his inquisitive nature. We shall see. I am interested to see if he chooses a different approach than her old neuro.

Ava turns two!

Well today Ava turned two! It was a landmark that used to scare me but as the day drew closer I realized there was nothing to fear. I guess it scared me because it was a reminder of all the things a two year old should be doing but I a have long since accepted the pace of Ava is just a part of who she is. I can guide and help her along but with her stubborn streak (like her mama) there is no way to force her to move any quicker than she is ready. Plus I can't help but celebrating the small but at the same time enormous milestones she has reached this year. Although if I were to list them it would not sound like much, I think it is just the wonderful character that is Ava that we have been getting a chance to know and love. Last night we had a dance party in the living room with Ava and Meggie and Craig and I and we swirled and laughed about the living room. Meggie had the grace of a ballerina (surprising with how klutzy she is!) and Ava bounced a bit and squealed in delight as I threw her in the air and caught her in a swoop, spinning us both around until dizzy with laughter.
When our dancing was done I got started on the keto recipe for chocolate cake that was given by Ava's dietitian. What a cake! I was worried after searching the Internet that I would have to rely on a cheese cake that she has eaten on many occasion but instead I received a recipe with coconut flour, sugar-free chocolate pudding and a bunch of other ingredients that turned it into a cake that was delicious for everybody. I quickly quadrupled the recipe and made cupcakes for her entire class and teachers for everybody to enjoy. At school I popped in to her school during lunch to watch her blow out her candles (with the help of Meggie) and I couldn't help feeling proud as the whole class munched happily away at the keto cakes without missing a beat. No one knew the difference and when Ava leaned into her neighbouring child to swipe at the icing I didn't jump up to stop her. The teacher, who loved the cake better than regular cake, asked that I teach their cook to make the cake for other birthdays in Ava's class. Success! The icing was one made with cream and sugar free chocolate pudding powder that formed into icing within minutes in the fridge and Ava just had to drink about 78 grams of straight cream in order to make the recipe a 4:1 but since luckily Ava loves cream, that was no problem.
The morning of her birthday Ava seemed to think something special was going on because she was even happier than usual and as I buckled her into her car seat she passionately and unexpectedly grabbed my arm and aggressively brought it to her mouth. I thought she was about to bite me although she has never done that before but instead she kissed me several times with such force I squealed with laughter. So sweet.
We took her out of school early and brought the girls to the fair and to supper (Ava's was prepacked...shrimp with butter and strawberries and cream with a bit of oil hidden in it).
She opened her gifts (with Meggie's help again) and liked the dancing Pooh bear that would only move if you shook a rattle but was terrified of the blow up fort with the trampoline. Anytime I would try to inch her closer to it she would throw herself into my arms and it felt like she was trying to climb up behind my neck. Again a first for her. I see a lot of quicker movement from her lately, although she really hasn't mastered any including sitting with her slouched posture and occasional falls.
Lately she will be sitting and then she will throw herself into four point crawl and then flop on her belly and go back to four point then sitting. She can't keep herself into crawl because of the lack of tone in her midsection but we have been trying to combat that by following her physio, Stacey's suggestions of working on the balance ball three times a day.
Ava loves Stacey, she spent the last appointment trying to kiss her the entire session. As Ava's drooly kisses are usually the things only a parent will love I couldn't help but laugh at this.
There really were no sad parts of the day for me, just sentimental which is new for this year's special occasions. I asked a friend of mine recently if he ever got sad when these big milestones came for his child but he said that over the years you take the small triumphs in their life and celebrate them.

So we are all moving forward in baby steps and learning much more than we ever thought we would have to learn in this life. We are even laughing quite a bit along the way and just getting to know each other as any family should. That is better than where I thought we would be only 11 months in to being told that Ava had severe developmental delay and seizures.
I still think about that often. The day I asked Ava's pediatrician if she would have a chance at a meaningful life and he point blank said no. But that is not true. Her life is meaningful now to us and to her and to all the people that know and love her. She cares what people do and loves to be cuddled and fears (trampolines) and laughs and loves. She is entirely her own person and we love who this person is with all our hearts. Happy birthday my sweet!

Ava laughing spontaneously

Ava laughed on her own when Meggie tripped by accident walking into the tent. Being the good sister she is she repeatedly 'tripped' to get her laughing more. Great!

A bit of luck

Ava's spinal results came back negative for everything which is great, but keeps leaving us confused. Fifty per cent of families never get a diagnosis. I wonder if they were as pushy as me.

When Ava was just starting out this mess at six months of age I called our local chiropractor. I had a feeling Ava wasn't moving right and I thought maybe she was hurt coming out of the birth canal so I thought he could see her. When I called him, he said it didn't sound like that and I should wait until I've spoken to all of the professionals and get back to him.

Well 16 months later I set up an appointment just to see if he could help adjust her because her posture is so bad.

When I got there, he wanted me to tell Ava's story from the beginning. What a good listener! When I was done he said that he wanted to do all he could to help Ava move forward. He said he wasn't sure what he could do as a chiropractor (he would look into it) but he said that his wife was extremely educated in this field (four degrees). She normally works out of Lunenburg doing research and practice with children with delays and autism in communicative technology. I guess even his mother-in-law is in the field of working with kids with developmental issues.
He said that he would discuss Ava with his wife and they would set up a individualized program for her. "We are going to do all we can to help Ava," he said. "I am going to make this my own project." His wife just had a baby on mothers day and they moved to Lockeport (7 min from me) for the year. He wants me to bring Ava to the house for sessions. He also wants me to create a detailed book on Ava, with timelines, therapies, medication, history...you name it.
I don't want to get too excited about this, i'm afraid that he went home that day and his wife was like 'you dolt, I don't want to work...I just had a baby!' which would be completely fair. It was really nice to hear though the dedication for this. I wish every professional we've met so far was this dedicated. When I went to leave he leaned in to the secretary and told her not to charge me for the visit. How cool is that? Although I feel bad because my insurance would have picked it up. I'll have to give more info as it comes, but I thought it such a nice change to have this kind of enthusiasm coming from someone other than us.

This is spinal tap

We decided to drive in to the IWK the night before to avoid the 2.5 hour drive each way and split it up. It was a really great decision. Ava had a blast getting all the attention for herself with Meggie at Nanna's and she loved swimming and just playing in a new setting.

Of course the next day wasn't so great. We got to the hospital early and the nurse put some numbing cream on Ava's back. She got brought to the OR on the neurology unit and they began. I think the worst part was how hard the nurse held Ava down. They had to curl her in a ball and hold her down with all their strength. I guess if she moved it could be pretty bad. The first needle drew blood so we had to start all over. By the end of it everybody was sweating and had clearly underestimated the strength of a low toned 21 month old.

The only thing left to do was take her blood but that took three tries, 20 minutes and another wrestle to the bed using three hospital staff. All in all it sucked but hopefully we can rule out or get some answers. The three things tested at the hospital including glucose came back normal but the folate, amino acid and b-6 was shipped to Montana for testing and will be back in a month. Unfortunately they didn't get enough of the spinal fluid to save for later. I asked the neuro if she could find a bit to send off for a wild shot in the dark pick put she just laughed...I wasn't really joking. That is what all of it is anyway, random guessing with a bit of educational background to support it.

Ava was all smiles after an exhausted nap and she was happy and engaging with the neuro. The neuro kept looking at Ava and exclaiming with surprise just how far she's come since the last appointment. She commented on how straight she was sitting, her hand use, how 'with it' she seemed and engaging. She said she wouldn't be surprised if Ava was pulling to stand by the time our next appointment rolled along in three months.

The neuro left to go to her next appointment and said goodbye but a minute or so later I looked up to see her standing in the doorway and staring at Ava and observing her. I think Ava surprised her, maybe she had an opinion that is changing a bit now. I'm not sure. Just a feeling.

Hope is a funny thing

I went to the grade school in town to take photos of a police dog visiting and I saw a little girl that reminded me of Ava. It had something to do with her hands. They hung in a funny way like she had a difficult time in her life using them properly. Her eyes were softly out of focus and she had a teachers aid sitting beside her. When the officer asked the class if anyone was afraid of dogs, the little girl (grade five) raised her hand and told the officer clearly that she was afraid. He asked if she was deathly afraid and she nodded solemnly that she was and so moved back a few rows. She was a sweet child who clearly thought and spoke and yet you could easily see she had delay issues. It's funny but this little girl gave me hope that one day Ava will independently walk and voice her concerns and opinions. Will be her own person. I wondered if this child's parents went through all of the unknowns and heartache that we are going through now.

Development update

We have been walking Ava around the house this week again. I hold her waist and back and let her lead. Physio said not to because kneeling would be more beneficial than walking. We want to do it anyway just because of the proud look on her face that she gets every time we do it. She is so pleased to be be 'walking'. I tried to get her to learn how to cruise by holding her and letting her side step herself. The great thing is that when we reached the end of the couch she reached on her own initiative to the rocking chair. I think she got the gist of what we were doing. Of course she won't be able to put any of this in practice until she learns how to pull to stand on her own but we are working. We will sit her in her little music chair and I will just hold out my fingers for her to grab and she will pull to a stand with a large grin. Her legs have always seemed strong though. It is just her core strength and arms, neck that were always so floppy and weak. She really does seem to enjoy her various therapies lately. She seems determined to learn. When we were working with the peanut ball she was out of breath from working so hard. So I went to give her a break. Somehow she rolled and wiggled her way back to the ball and was raising her shoulders and hands like she wanted to crawl back on top of it. Very cool.

Diet

I am working hard to eliminate the remaining stubborn seizures. If I can do this through diet then I will. I am only using the freshest ingredients that I have prepared myself so that I know exactly the carb content. I am also writing down in a journal absolutely everything that she is doing. What is going in and what is coming out. I am monitoring her ketones more often and using a dropper to weigh out the cream and milk, so that the measurement is to the gram exactly (and not 1.5 grams) I am making sure that her eating schedule is exactly the same time every day and from there we will see if her seizures improve more.

I am also trying not to add or take away too much anymore. She had a high incidence of seizures when I did that. I figured out it was the coconut oil (There must have been trace carbs in it, because when I stopped it her seizures stopped as well).

This is her cheesecake I made yesterday for her. She loves it so much. Not only is it delicious it also is pretty dense, so it sticks well to the spoon. It works as good motivation to use her hands. I will stick it to the spoon and put the spoon in her hand and let her go at it. She now will raise the spoon to her mouth and eat it. We will work next on getting her to scoop it out of the bowl but one step at a time.






Ava holding her bottle is a huge leap forward. This is something she will do when we place it in her hands. But it is a great start and hopefully will evolve to her being able to feed herself.

Ava's medical summery. We are switching neurologists. The only thing inaccurate here is the last sentence that says that her tear production has resolved. It hasn't.

More words!

Ava said Mom! Her babysitter told me she was sure that Ava said mom but I knew that although she does not babble she will occasionally say something that sounds like mom. But for yesterday and today she was really saying it. Not mama like Meggie but mom. Then she looked right at me and said slowly but clearly mom, up! That is two words in one week. I really hope this trend continues because she can do so little that it would be nice for her to be able to let me know what she wants. You can really see her thinking out the word when she says it and the deliberate way she pronounces them. That is how I know it is not a babble. When Ava first said up, I had to call Theresa, Ava's early intervention worker to let her know. She is an amazing part of Ava's therapy.
She said that usually when kids (even kids with a global delay) start to speak, it is an explosion of words and it doesn't take long for more to come. So I guess it is unlike her painfully slow physical development. I can easily track each movement over the months down to when she learned to shift her knee from one spot to the next. I have tried to slow down my words now to Ava and have been pointing to and repeating words all the time now that she is paying attention.
I tried getting her and I to learn some baby sign but I don't think that will work since her mouth works better than her hands or arms.
You can see her exercising her tongue during the day. She will twist and turn it and her newest hobby is to push all of the food out of her mouth while eating, so that has become pretty difficult for meal times. Oh well, it's progress so I won't complain.
We also went to see a homeopathic doctor yesterday. I was pretty weary going but she made me feel a bit better by saying she needed to do more research and look into it. I think her focus is food by the sounds of it and I told her that her diet could not be touched. I think the best thing that I took from the appointment was her suggestion to rub Ava's stomach in a clockwork pattern every diaper change using castor oil. (on the skin not ingested). She had her first solid poop in months the next morning. I think that Ava's stomach has been irritated lately and maybe this will help. I think I will go to one more appointment and see what she has to offer before making a decision on whether to continue.

frustrated!

I am so glad we are switching neurologists. I am so frustrated with the care Ava is getting and the lack of communication I am getting with her current one. I don't know if I am overly sensitive or if she truly is giving substandard care. I feel that the steps the neurologist has taken in diagnosing Ava has been the basic route care doing no more than standard. I fear if Ava (and she obviously does if they haven't found what is wrong yet) has a syndrome or disorder that does not fit neatly into their check boxes then they will never find the answer. We first saw the neurologist at 13 months where we had an eeg and blood and urine work up. Then at 14 months a MRI (they wanted us to wait six months! And only through fighting everyday for two weeks did we get earlier.) At 15 months the ketogenic diet (again only at our insistance and refusing to take no as an answer...they wanted us to wait at least a year) a eeg, genetic workup including a microarray and a check up three months later with more blood work with another eeg. I guess it sounds like a lot when put together but for a mother who has not found the answer or even come close then it is not enough. The last appointment the neuro said that she was at the end of her diagnostic abilities. She also said maybe when Ava was 20 they might find an answer. Are you freaking kidding me?! I can't believe she said that. She has been looking for seven months. That is not long enough to give up. She suggested that we try a new neurologist. We said yes but wait until her abilities were exhausted (she is still to check the cerebral spinal fluid (in a couple weeks) and do a muscle biopsy. My question is why not check all of these things one after another? Why wait so long between everything so that more and more time passes. The funny thing is that they only check for three things in the spine. One of which the treatment for it was the ketogenic diet. That is why they didn't want Ava to have it. I asked if she could had folate deficiency and brought in an article that sounded a bit like her. So for her credit she did add it. But what about all the other ones I am not aware of that should be tested. Should a parent have to constantly fight to achieve adequate care for their child? Where is Ava's super hero that will work tirelessly to find the truth? We hope this next neurologist will be more interested in Ava and we have a feeling that he will be. Just needed to rant.

sickies

Just a quick note to let people know we are still alive (sort of). We all have an infection that is just awful. Sinus headaches, throwing up, runny noses, consistent coughs and body aches and slight fevers oh yeah and larengitis (for me anyway) Everybody has been sick since last Wednesday but we are all on antibiotics so hopefully this will be a distant memory soon. Through this Ava is still giving little kisses and winks and trying to play.
Of course with the sickness also comes the seizures and she has started to jerk almost as much as before the diet. I hope when this is over she will get back on track quickly.
In the meantime we are all just going to snuggle and watch bad movies and keep the kleenex co. in business.

Easter fun

Ava had a wonderful day yesterday. I don't know if it was the extra dose of B12 I gave her or if it was that she was happy to see everybody. She is such a social butterfly at times. She was so excited she kept bouncing and squealing when she wanted to get picked up.
She had lots of pretty smiles for the day and I loved her energy. Ava is fixated with hair and when we want to make her happy we will lower our heads so that she can grab and play with it. So this weekend we put her on the grass and she went nuts grabbing at the grass and loving it. It must have reminded her of her favourite past time.

On a bad note, in the last two weeks we have noticed that her sitting is becoming less and less steady. She is starting to fall over a bit more often. The other thing is that her slouch is horrible. I am hoping that it is just because she is sitting for such long periods of time rather than it be degenerative.
The other thing is that this past four days her jerks have come back with a vengence. We did change quite a bit at once in her diet. Added coconut oil, canitor and increased calories and added branched chain amino acids. I may have to cut back on most and start again to figure it out. I hate seeing her have them now that I know what they are and how they effect her. Her dietitian isn't back in to work till the morning so I will have to call her then.

My developmental focus for this month will be to engage Ava. In whatever path she leads me to I hope to try to make a connection with her as often as I can throughout the day. It is good for both of us.

Easter pics

"Once there was a little bunny who wanted to run away.

So he said to his mother, “I am running away.”

“If you run away,” said his mother,

“I will run after you.

For you are my little bunny.”

“If you run after me,” said the little bunny,

“I will become a fish in a trout stream and I will swim away from you.”

“If you become a fish in a trout stream,” said his mother,

“I will become a fisherman and I will fish for you.”

“If you become a fisherman,” said the little bunny,

“I will become a rock on the mountain, high above you.”

“If you become a rock on the mountain high above me,”

said his mother, “I will become a mountain climber,

and I will climb to where you are.”

“If you become a mountain climber,”said the little bunny,

“I will be a crocus in a hidden garden.”

“If you become a crocus in a hidden garden,”said his mother,

“I will be a gardener. And I will find you.”

“If you are a gardener and find me,” said the little bunny,

“I will be a bird and fly away from you.”

“If you become a bird and fly away from me,” said his mother,

“I will be a tree that you come home to.”

“If you become a tree,” said the little bunny,

“I will become a little sailboat, and I will sail away from you.”

“If you become a sailboat and sail away from me,”said his mother,

“I will become the wind and blow you where I want you to go.”

“If you become the wind and blow me,” said the little bunny,

“I will join a circus and fly away on a flying trapeze.”

“If you go flying on a flying trapeze,” said his mother,

“I will be a tightrope walker,and I will walk across the air to you.”

“If you become a tightrope walker and walk across the air,” said the bunny,

“I will become a little boy and run into a house.”

“If you become a little boy and run into a house,”said the mother bunny,

“I will become your mother and catch you in my arms and hug you.”

“Shucks,” said the bunny,

“I might just as well stay where I am and be your little bunny.”

And so he did.

“Have a carrot,” said the mother bunny."

In the news

Here is a column I wrote for this weeks paper (many things already shared in my blog) I just can't get away from sharing that pic of Ava...she is just too cute in it.

http://www.thecoastguard.ca/Living/2010-03-31/article-975745/The-power-of-diet/1

Ava's first word

Ava said her first word! She reached her arms up as far as she could (another skill she just picked up this last two weeks) and said up! We had been practicing that word for about two months now. I picked her up and again she said up. I tried again and put her on the floor and told Craig to listen. I said do you want up Ava? She said up, again! Only when I tried to get it on film did she stop saying it. Typical! Right before she said up we were playing with a block and hammer set where she has to bang in the blocks but I couldn't find the hammer. I kept saying Craig where is the hammer, I finally just found the hammer and do you think the hammer is under the table? I found it and gave Ava the hammer and she said clear as a bell hammer. I looked at Craig and laughed and said there you go her first word...hammer. I was joking though because I think it was just a coincidence. Funny she said up right after. Proud of my girl.
This week she also began truly reaching for things with her hands and for the first time really trying to use her hands. She easily reached into a soft container and plucked out a toy today, a skill we have been trying to get her to do for a long time now. These are all very good steps forward. I hope to see this flurry continue.
She also has reached a new emotional milestone of separation anxiety. We are having a difficult time leaving the room even for a bathroom break. She wails her 'you killed my pony cry' with slumped shoulders and all. The other day she cried when I walked out of the room to get something so I came back and sat down. That cheered her up until the dog came in the room. Ava reached out to pet him and the dog walked out. Same huge bawling episode until I called the dog back and instant cheer.
She also has somehow without crawling been moving across the room. She falls down onto her belly and then sits up and lays down and sits up until she gets to where she wants. She did this three times this past weekend. One time it was to touch the giant teddy bear that was sitting in the rocking chair. I know because she was looking at it from across the room and I asked her if she wanted to see the bear. Before I got a chance to bring her over I was distracted by Meg screaming bloody murder over her computer game. By the time I got back to Ava five minutes later she was clear across the room and hugging the bear's leg.
I think the best thing is the fact that she is wanting to interact with us now. Not all the time but definately more often than usual. Her cute bum wiggle that she likes to give while laying on her tummy is getting more pronounced (so cute) I think it is her desire to crawl. Today with EI when we were distracted from Ava and talking she would lay down and practice the crawling (bum wiggle) on her own. Like hey we're working here!
I changed most of her fat in her diet to coconut oil, coconut butter and even coconut milk in some of her bottles. Not sure if it will help but her seizures began when she stopped breastfeeding and coconuts are the only source of lauric acid found in breast milk. Connection. Who knows, but for now we are coco for coconuts!
I found out by requesting her blood work and going through it myself that Ava's carnitine was 14.4, according to the lab that processed it, deficient levels (children's hospital in Toronto) when I requested further to Halifax they said that her previous levels were normal. I said well what were they and they said 14.6. I said that is what they were now and then got pretty confused. Apparently Halifax says 14 to 60 is normal and Toronto says 25 to 60 is normal. What is normal? In the meantime she is getting on Carnitor, just to be safe.

We went to see a phychiatrist today to see if Ava has autism on top of everything else. I must be the only parent trying to convince the docs she does have autism. It would mean four days a week of intervention for Ava and physio, speech and all coming to the house for sessions that would be about four hours a day for a year. Very intense and all based on a specific learning approach. The only problem is that they have only two spots for the entire tri-county region. That is a problem. They actually pick a name out of a hat for the kids who need the services. A bit insane. Supposedly in other provinces they have to pay a not so small fortune a year for these services, and here is offered for free. If you don't get the spot then you do still have an autistic team but less intense and probably similar to Ava's schedual now but everything at her home. One day every two weeks intervention, physio and occupational and speech. (We go private for any additional physio we get for Ava which works for us fine) They are sending everything to Yarmouth and she will be assessed then. Supposedly we are moving fast through the system right now which is a relief. I can't handle waiting very well. Too much is at stake.

A very good week all in all!

The most recent eeg

About a month ago now we went for a follow up EEG after initiating the ketogenic diet. The technician put all the gooey leads to Ava's head (we joked that all the neuro kids were sporting this spikey hair gel look). This time Ava reached up to twirl and play with her hair and we had to keep her hands to her side or risk the leads being pulled out. The last EEG that we went to had a look of a child's very messy drawings it scribbled in every direction and was as close to being hypsarythmia without actually being it. This time when the EEG readings began to run through it was this neat little scribble, more of a librarians writing than an excitable toddler's.
About halfway through the technician started going through her notes, comparing the last one with this one. "When was it that she started this diet again," she whispered. "And you say she isn't on any medication?" I told her it had been exactly three months and she said that was incredible. At the end of the reading, they did the photo stimulation which elicited jerk after jerk as the strobe lights flashed. "That is enough of that," said the technician. The technician told us that she couldn't let us know what was read but I could tell the differences on the eeg without training. Anyone could. "I am really excited about this," she said. It turns out that Ava had only one seizure on the eeg in an hour except for the end photo stimulation which caused many. We will have to be careful taking photos of her that the flash is off.

I am very happy that the diet is working to control about 95 per cent of her seizures. Only 30 per cent of children gain this. I am not satisfied though and am hoping that we can completely get rid of them. I mean, who can be truly happy that their child has a seizure an hour? Give or take. This is a really good start though and at least with most of the seizures out of the way and no drugs we know what we are working with and what is Ava.

Ava's development

Just a note on how Ava has developed so far. It is easy to track because each skill she has acquired has been painfully slow. When she was three months old I would pull her to a sit and her head would fall back in a lag. She always grinned when I did it so for some reason I thought she was playing. The doc noted it (but of course didn't tell me anything other than hmmm.) When I would put her on her tummy she would scream and scream without moving her head to the side but after a couple months of doing it anyway she stopped and began to raise her head up a bit (five months). The biggest gross motor development so far is her sitting. I remember very clearly the day she first sat. She was 13 months old and I was propping her up against the couch on the floor. When I let go she stayed up and then inched forward and still stayed up. I was so excited. I moved her to the middle of the floor and like defying gravity she did it. Just like that, after five months of propping and trying to help her sit. Suddenly she was sitting like a pro. Within weeks she learned to stop her fall with her hands (another huge milestone) and began getting steadier. A few weeks after starting the keto diet (16 months) she started picking things up for the first time with her hands and bringing them to her mouth. She could never get something as far as her mouth before. At 17 months she began to get into sitting from laying. That is still something she is perfecting. Some days it takes a lot of effort and other times she just pops right up.

We are beginning to realize a learning pattern for her. At eight months she blew raspberries then stopped, she babbled ma da num and nigh then stopped, she shook her head yes and no then stopped, months later she started blowing raspberries again, then she started (not often) slightly shaking her head no again. I was worried about this wondering if it was degenerative but her neuro thinks that it is normal. Like when Meggie would master a skill she would stop it for a week as she learned another and it would come back. It just takes Ava about two to four months to learn a skill she is working on. (Closer to two) For the past two months Ava has been twisting and placing her hands beside her like in a crawl. That is all she ever wants to do. Twist and place then back up and repeat. Last week she started moving her back knee up to try to make it over but can't quite make it. She also is starting to multi task. While learning to get into the crawl she has also started to place her hands in front of her in a sit position as if getting ready to bum shuffle. I have seen her move an inch forward.
She also is twisting to where she wants to go and leaning in that direction so hopefully we will see some kind of locomotion before her second birthday.
To help her gain arm strength I will hold her knees and walk her around the room like a wheelbarrow. She does walk her hands and seems to enjoy it.
We have also begun to work with her standing from sitting. I sit her on my knee and hold her hands and she will stand up on her own (she is so proud when she does it...yeah Ava!)
This weekend the whole family was singing kareoke on the PS3 and I put the mic up to her mouth and she scrunched up her nose in her 'i'm so cute expression' and sang 'ahhh' into the mic, it was no fluke either because the nose thing happened every time. I think I will bring a mic to her hearing and speech class.

No answers

Genetics came back negative for everything. The neurologist still does not know why Ava is like this and so we just have to keep moving forward without an answer.
In the meantime we continued to follow the diet and I would encourage any parent to start the diet early. I imagine it is so much easier. Ava doesn't know what pizza is so she won't miss it. I think the hardest part of the diet is the guilt you feel about not letting your child eat all the things you know is yummy. It's also not very nice to see their cheeks glistening with oil after a meal.
But the possibility of seizure control is too important to compromise for an ice cream sunday.
At first I would weigh out all of her food a week in advance but now I just wake up and weigh her breakfast which from Monday to Friday is something that looks and tastes like minigo yogurt. It has 7 g of oil, 6g of oatmeal, 13 g of cream and 12 g of mini go for a 4:1 ratio and 360 calories. She loves it. On weekends I make her an egg omelet that I would eat myself it looks so good.
For lunch she gets chicken breast with bacon green onion and tomato with mayo and a dash of lime juice. Or chicken and apples with cream and margarine. For beef meals I sprinkle a bit of beef bouillon, beef strips, sour cream and margarine and it tastes pretty good. I always mix everything together, it makes it easier that she gets the proper ratio. If she spits something out or it drops on her bib, I just scoop it up and put it back in her mouth.
Supper I usually make while I am making the family's meal. Here I try to make it as close to what we are having.
I go the easy way out with her bottles and use the ketocal. I find the small amounts of milk and cream difficult to weigh out and she stays in better ketosis with the ketocal. I might go back soon though because a milk bill of $200 a month is a bit pricey.
Ketosis is what happens when the body starts burning off fat for energy when there is no carbohydrate in the body. We test her ketones three times a week in the morning and evening. I used to test it five times a day while initiating the diet so that I knew exactly when she was in ketosis. Now I will when I change a meal or add one or we change her calories.
There are some things that will pull her out of ketosis even when we follow the diet. For example when she teethes, is sick, tires or just upset. Sometimes I notice that when her routine changes or she exerts herself too hard seizures will break through. I don't worry about those yet because they are out of my control.
There is a light at the end of this buttery tunnel, that maybe in two years we might be able to stop the diet but for now we are trucking along without too many bumps.

A different kind of miracle

At the hospital we were bombarded with tests and a medical team. After having such slow progress in diagnosis it was a bit overwhelming.
First we met Ava's dietitian, Cindy. She explained the diet to us and what we would expect throughout the week. She said she would visit everyday and give us new information a little at a time so we would not be overwhelmed.
We then were scheduled for an EEG but so far Ava had not eaten since 7 pm the night before and it was now 2:00 p.m. Her reading showed a marked improvement but every other page still showed a messy wavy picture of seizure activity.
Then she was seen by an opthamologist to see if he could diagnose her. Unfortunately the doc was fresh out of school and although he did a thorough look at Ava he admitted his experience was lacking indeed.
One of the features of Ava that stands out for me is her inability to cry tears. Her eyes are moist, but tears never overflow. They did a quick search and came up with Allgrove syndrome. Because Ava's eyes are moist though they do not worry about this.
I find that extremely frustrating because If you try to find a diagnosis for seizures and developmental delay you are fighting through thousands of possibilities, if you add alacrima, the list narrows significantly (like less than twenty I think).
Here was the key to finding out why, but I have spoken to three opthomologists and her neurologist without getting much interest back. I will pursue this matter more aggressively soon.
That same day we met with a geneticist who was pretty cool.
Within the first five minutes she had questioned things I had wondered about after two months of googling. Biotenaise and angelmen being two in particular.
The diet had begun and food was sent up three times per day. We had a few learning bumps where Ava could not possibly swallow what was sent. She had been experiencing a downfall to her great eating where everything was making her gag.
But by the third day something quite amazing happened. Ava was in a high chair in our hospital room and my husband banged his hand down on the table in front of him and said bang to Ava.
Ava slapped her own hand down in imitation and grinned. Craig did it again, and so did she. Then he did it once more but stopped before making impact. She stopped too and gave a real belly laugh like hey you tricked me.
That was the first sign that something was changing.
I wouldn't say that the fog that surrounded her has lifted but I would definitely say that it has expanded to include a lot more so that she is more aware to what is going on around her.
It wasn't the absolute miracle that we were hoping for but it is the first step in learning. Without that interest there couldn't possibly be progression.

The Ketogenic Diet

I first came across the Ketogenic Diet while reading a textbook on epilepsy. I quickly found the website Mathews friends and began to read stories of hope in controlling seizures. Ava's pattern of seizures were continuing and from reading other parents stories of seizure control (or lack thereof) I knew I did not want to wait for Ava to be on four different drugs with limited control before beginning the diet.
I went to her pediatrician and asked him about the diet.
"Yuck", he said wrinkling his nose in distaste. "You have to feed your child things like butter and mayo."
End of subject for him. No facts on how the diet could be successful for many or how Ava is an excellent candidate for the diet because she only has myoclonic seizures. Nope, just yuck.
It is a good thing I am both stubborn and don't listen very well or perhaps I would have been deterred.
A few days later I contacted her neurologist. She suggested we wait a bit longer before thinking about it. She said that it wasn't something we enter into lightly as we need to spend a week in the hospital to initiate the diet.
I bugged her again two weeks later. I wasn't going away. I think she realized that we would be committed to the diet and said we would come in probably around three months later.
I read up as much as I could about the diet and would dream about the really amazing success stories where children were going in to the hospital in wheelchairs and leaving skipping down the hallways.
After about a week of this I had to check myself of these dreams. We were doomed to fail the diet if our expectations were so high. I changed (with effort) my expectations to have seizure control and put the hope for a miracle through the diet on the back burner.
We got a nice surprise when the hospital called to say they had an earlier opening and could we come in two weeks! Within 20 minutes I had childcare arranged me and my husbands work vacations booked and the dog taken care of.
Everybody knew how important this was for Ava.
Before long we were taking the 2.5 hour drive to the hospital to initiate the diet and despite my best efforts the hope for a miracle resurfaced to create a dance of anticipation in my tummy.

Ava's history

Ava was born weighing 8 pounds 8 oz on August 13, 2008. She was what we thought a healthy baby. She latched on right away and fed beautifully, slept well and responded well to touch and voices. At two months she rolled over once but I never saw her do this again for a long time. She also began to smile. At five months she began to eat solid food and could easily tackle the mushed up baby food. We began to realize some different things with Ava than with our 3 year old at the same age. When Ava would try to bring her hand to her mouth, she kept missing. She would take several swings and sometimes would raise her hand to her mouth using her other hand. We thought it was pretty cute and were not worried. At six months I began to be slightly worried that she wasn't sitting. She had just begun to roll but one way only and hated tummy time. She would lay face down on the floor and bawl. Eventually after giving her ample floor time she began to lay there without crying but had difficulties lifting herself up. At around five months I noticed that she would startle quite often everyday. I thought maybe I was surprising her when I reached out towards her. At seven months I brought her to the docs because that is what the books said I should do. I wasn't really concerned, just trying to be a good parent. He set us up with a pediatrician and at eight months we saw one. He checked her over and said to come back at a year in the meantime we began physio and occupational therapy and signed up for speech. While making these appointments I was apologetic and felt that I was wasting their time because I knew Ava would suddenly start developing with a flurry. At eleven months I was very worried. Ava had not developed much from six months, she still could not put her hand to her mouth. She could now roll both ways but she still could not sit. Her jerks were more apparent (just awareness of it I think). I began to search the net and found something called startle seizures. Ava would sit on my lap and every time I scrolled down the page Ava would jerk. When she was an infant she had an exaggerated startle and at first I thought she was retaining her moro reflex and was in a constant state of fight or flight (my theory only). We went to see the pediatrician and he checked her over and said she had global developmental delay. He could not see any unusual look about her that would point to a genetic disposition. Although he did notice tiny folds behind the ears. I asked him about the startles she was having every five minutes now. He witnessed quite a few. I asked him if it possibly be seizures but he said no definitely not seizures...although it would get us in the neurologist faster. I was filled with an assertiveness very much unlike me and told the doctor to write down seizures. I didn't care what he thought or if they were or not as long as she got into the right care. That would be the first of many times so far that the mama bear in me would come out. At 12 months we went to the IWK for a neurology appointment. The eeg showed lines that to me looked like a child's messy handwriting. Huge scribbles that would go up and down across the page. The neurologist brought us into her office and let us know that Ava was experiencing myoclonic seizure activity every five seconds according to the egg. At first I felt relief because I figured we found the reason for her delay. Now all we had to do was stop the seizures and my baby would be alright. The neurologist dashed that almost immediately saying that seizures do not cause delay, but more likely her seizures and delay are caused by the same thing. (That is yet to be determined in my heart or by her diagnosis or lack thereof).
She took blood and urine samples and prescribed valproic acid. She also warned us that the medicine could pose a risk to her young liver and to watch out for signs like yellowing of the eyeballs.
When we got her on the beginning dose of meds, her startles seemed to reduce. She learned to sit! What a miracle that was to see. She was raised up to her next dose the same day she started swimming lessons at 14 months, she began to babble saying ma ma, ba ba, num num and nigh nigh for two days then stopped. I noticed that on the day she increased her meds she would get a flurry of activity and then stop. After a week on the med dose seizures would begin to creep up again.
While playing with dosages we started really aggressively promoting Ava's development. At home I would take the things I learned at physio or early intervention and work with it. I also would attempt a few MacGaiver moves of my own. I attempted to get Ava in four point by laying her on a kids skate board cushioned by a blanket. I would wrap a 2-litre plastic bottle of pop in a heavy sock and stick it under her belly (boy did she get mad, but it worked). I would sling a sheet around her torso and pick her up just enough to provide support so that she could experience weight bearing on her hands. We nicknamed her Rocky and would hum the theme song 'getting stronger' every time we would begin a session.
The biggest problem for Ava is that she would get tired. She would work for five minutes and need to rest for five minutes. She looked exhausted all the time. Seizure control was not working to my satisfaction and it was time to find another alternative.