12.13.16 All About That Spine

This week has a spinal focus. We started on Wednesday with a back surgery for Ed. Aimee provided emotional support and Ed is recovering at home this week. 

Yesterday we took Aimee in to consult, in a joint appointment, with the Orthopedic surgeon and the Pulmonologist. We had new x-rays and a different type of lung examination.

Seated X-ray:
 

Traction x-Ray:

The good news is that there has not been a significant change in the traction x-ray (when they try to pull her straight) over the past few months. Other than that, it was mostly not great news. 

My expectation going into this appointment was for them to see no change in her x-ray and for the pulmonologist to listen to her lungs/check her o2 sat and tell us she sounded clear and her sat number is great. Instead, this doctor did an indepth questioning of Aimee's history and a much more thourough pulmonary exam. He listened to both her lungs together, measured different distortions in her chest, and gaged the effort it is taking her to breath. 

I don't know all the terminology for these things yet, but the short of it is that her lung function is being impaired by the curving and twisting of her spine, as well as, the distortion and flatness of her ribs. Her left lung is particularly impaired. The doctor said that there is a delay in her exhale on that side, meaning smaller openings. There is a significant handle on that left side back of her ribs. He showed me to watch for breathing effort on the base of her throat. She works hard to breath. 

We will go back in after this flu season to remeet with these same 2 doctors. Together they will decide when it is time to intervene, which they anticipate will be in the next year or so. This intervention will be a spine surgery to add magnetic growth rods, something that we had hoped was much further away. 

12.1.16 Doctor's Prognosis

It is icky to talk about end of life ahead of time, but, practically, we have to discuss it. Here is what we heard from the neurogenetics doctor. 

The first questions addressed in this issue were financial. Do we need to worry about who will take care of our child when we pass away? Do we need to be concerned about caring for our child as she grows and we age? He was strongly of the opinion that we do not need to plan for either event. This brought a sickening blend of relief and repulsion inside of me. It is terrifying to think of leaving Aimee's care to anyone else. Yet... he gave her no chance. 

As far as life expectancy in numbers, this doctor gave her a 50% chance of living to 14, 25% of living to 21, and down quickly from that point. His opinion is that the body wears down exponentially fast under these conditions. 

Lastly, the doctor encouraged us again to discuss (and continutally rediscuss) our wishes as far as care and resuscitation in case of life threatening illness. He recommended attempting to make this decision from Aimee's perspective, not from a parent point of view. We would try to take into account her comfort, her quality of life, her ability to live the life she enjoys. We don't want to miserably prolong life beyond its natural ending basically. 

In all of this, we come back to Aimee. Aimee is happy, healthy, and having fun. She is delighted that Christmas lights are up and music is playing. She is here and she is enjoying living! There is future to discuss, hypotheticals to consider, and then there is this smile to catch. 

11.27.16 A Silver Bullet

We left our appointment with Neurogenetics on Monday with a multitude of emotions. One of them was hope.

Dr Dobyns described to us that knowing the underlying cause of Aimee's symptoms could allow us to find a "silver bullet" solution. We now know that her brain cells are not communicating well due to the signal being damaged by malfunctions in the potassium channel. Dr Dobyns is guessing that Aimee's malfunction is causing the channel to remain nearly closed. It is blocking signals. He is making this guess based off of the fact that Aimee's seizures are much less of an issue for her and her developmental delay and central nervous system issues are a much bigger issue.

Back in 2013, this potential for a targeted approach was described by an article from the American Academy of Neurology:

Until now, the focus of treatment of patients with epilepsy in general has always been on treating the symptoms, i.e., seizures. Nevertheless, now that increasing numbers of genetic causes of EE (epileptic encephalopathy) are being discovered, we should start targeting the underlying cause rather than the symptom. In the last few years, gene therapies for neurologic diseases are being intensively studied in neuromuscular disorders and Huntington disease... In the field of epilepsy, we are still lagging behind in targeted gene therapy development, and it is time to make the mental shift when we think about developing novel epilepsy therapies. Indeed, specifically inhibiting transcription or translation of the mutated KCNQ2 allele would lead to a loss-of-function situation, mimicking a KCNQ2 deletion, which in turn is known to lead to the milder BFNS phenotype. Such a strategy therefore has the potential to turn a severe EE into a benign neonatal epilepsy syndrome.

(From the Neurogenetics Group (S.W., R.H., A.S., P.D.J.), Department of Molecular Genetics, VIB, Antwerp; Laboratory of Neurogenetics (S.W., R.H., A.S., P.D.J.), Institute of Born-Bunge, University of Antwerp, Belgium; Epilepsy Centre Kempenhaege (S.W.), Oosterhout, the Netherlands; Department of Paediatrics (V.I.), University Hospital Centre Zagreb, Croatia; Division of Pediatric Neurology and Metabolism (R.V.C.), Department of Pediatrics, University Hospital Ghent, Belgium; Danish Epilepsy Centre (H.H., R.S.M.), Dianalund; Institute for Regional Health Research (H.H.), University of Southern Denmark, Odense; Department of Child Neurology (S.G.), Juliane Marie Center, Rigshospital, Copenhagen, Denmark; Pediatric Neurology (A.-S.S., B.C.), Department of Neurology (A.-S.S., B.C., P.D.J), Antwerp University Hospital, Antwerp University, Antwerp, Belgium; Epilepsy Research Centre (S.B.H., S.M., I.S.), Department of Medicine, University of Melbourne, Austin Health, Australia; Great Ormond Street Hospital (C.E.), London; Institute of Genetic Medicine (R.H.), Newcastle University, UK; Child Neurology and Neurorehabilitation Unit (G.C., M.A.), Department of Pediatrics, Central Hospital of Bolzano; Neurology Unit and laboratories (T.P., R.G., C.M.), A. Meyer Children's Hospital, Florence; Child Neuropsychiatry Unit (L.G.), Spedali Civili, Brescia, Italy; Padiatrie I (K.R., E.H.), Division of Pediatric Neurology, University Hospital Innsbruck, Austria; University Hospital Essen (B.A.), University Duisburg-Essen; Department of Paediatric Neurology and Developmental Medicine (A.B.), University Children's Hospital Tubingen, Eberhart Karla University Tubingen; Center for Child Neurology (I.B.), San Krankenhaus Gerresheim, Dusseldorf; Department of Neuropediatrics (S.S.), Hospital for Children and Adolescents, University of Leipzig, Germany; Department of Neurology (B.S., A.P.), Boston Children's Hospital, Harvard School of Medicine; Department of Biology (B.S.), Brandeis University, Waltham, MA; University Children's Hospital (J.R.L), Division of Human Genetics, Inselspital Bern, Switzerland; Departments of Radiology (S.M.) and Pediatrics (S.M., I.S.), University of Melbourne, Royal Children's Hospital, Melbourne; Florey Institute (I.S.), Melbourne, Australia ; and Pediatric Neurology and Muscular Diseases Unit (P.S.), Department of Neurosciences, University of Genoa, G. Gaslini Institute, Genova, Italy:  Extending the KCNQ2 encephalopathy spectrum, American Academy of Neurology, 2013 Nov 5; 1703)

There are two major types of KCNQ2. The first is known as BNFE, which is Benign Familial Neonatal Epilepsy. It has zero detrimental long term effects and seizures end early on in life. The second is labeled as NEE or Neonatal Epileptic Encephalopathy. It has varied effects, though all include at least some form of intellectual disability. In the above reference, it is discussed that there is a possibility of creating a therapy to turn the severe form (which is what Aimee has) into the benign form.

Since the above article, a designer drug has been refined, which is "an activator of neuronal expressed KCNQ channels."  This medication is now in its 2nd generation and it has shown hopeful results, including increase in cognitive function. This precision medicine is known as Potiga (Ezogabine/Retigabine). Unfortunately, it is being pulled from the market this coming summer due to the low number of sales. We are joining an effort with other KCNQ2 families to petition the maker GlaxoSmithKline to keep this option available for the increasing number of patients diagnosed. That being said, more recent articles do reference newer, improved drugs that are in early developmental stages. It is an amazing feeling knowing that, although there is no cure, there is hope for normalizing function.

11.24.16 De Novo KCNQ2

Yesterday I got a confirmation phone call from the genetics lab that there were zero KCNQ2 genes in either Ed's or my blood.     They are confident that this is a sporadic mutation, which means that although it is in the gene, it is not inherited. 

However, they cannot give us a 0% chance of having another child with the same genetic mutation. There is a slight possibility of germline mosaicism, though this risk is approximately 1%. The medical recommendation is amnio testing on any future pregnancy, which they estimate to be near 100% accurate for gene mutation. This doctor would recommend termination and said that he would not see why another course would be chosen. 

Obviously, Ed and I had already made a decision to continue having children without waiting for a diagnosis. We knew it would potentially be a risk. This is not a simple decision to make, but we see Aimee as valuable and worth raising. We would be very grieved if there was a reoccurance, but we would not consider missing out on bringing a precious person into our family whether disabled or fully able. To be clear, I can understand the great pain that would cause a family to choose termination. I can understand, though it breaks me, because I also know how much we would have missed without Aimee. 

That being said, one of my primary questions after we received Aimee's diagnosis was for Caleb and Elliot. Could they possibily be carriers? Blessedly, no. There is 0% chance that they would pass this mutation to their own children. If they had received a single mutated cell, it would have been in all their cells, meaning that they would have been in the boat with Aimee. They have no chance of passing KCNQ2 on to their children. 

11.23.16 KCNQ2 Variant

It is really amazing that researchers are even able to identify KCNQ2 and its variants. The genetic counselor described the process to us as using Google Maps. As if we were looking at the whole earth and needing to find our house on that map. Researchers remove the DNA strand from a cell, unravel it, look at each portion, zoom in, and search for spelling errors. In Aimee's case, the error is a replacement in one location of one amino acid for another. The chromosome is 20q13.33 (this is the KCNQ2 gene). Her variant is coded at location c.602 G>A and the swap is Arginine to Histidine (Protein name Arg201His). This is called a missense mutation. All of this from swapping in the wrong amino acid in one little tiny spot. Dr Dobyns shook his head as he said that this particular swap out was particularly incompatible.

There are numerous other possible errors that happen in the gene, each causing a different variant. From what I can tell so far, there are least 150 different variants currently registered. Because there are so many and because this gene is newly discovered, there is not sufficient data to determine how each variant influences outcome.

I am in the process of filling out paperwork to have Aimee participate in the RIKEE Project (Rational Intervention for KCNQ2/3 Epileptic Encephalopathy). There is hope that with more data effective therapies will be developed based on underlying causes.

11.22.16 Aimee and KCNQ2

Yesterday's big appointment with the Neurogenetics Reseach Doctor was full of details and answers. There is so much to share that I will spend the next several days posting different bits of information. 

The basics are as follows:

-Aimee tested positive both in the research genetics lab and clinical dna diagnostics lab for KCNQ2 gene.

-This is inherited in an autosomal dominant or heterozygous manner, though Aimee appears to have a de novo variant.

-This micro change alters the function of the potassium channel in brain cells, though how severely, and in which way, depend on which variant. 

-There are possible treatment indications and drug trials specifically targeting the potassium channel.

-KCNQ2 is quickly becoming a bigger deal. It is currently considered the major epilespy gene and is just beginning to be understood. Most of the studies and literature are from the past 2 years. Some from early 2016 list only 100 known individuals. There are over 400 and counting in more recent papers. There is a VERY broad prognosis spectrum and as many questions as answers at this time. 

The nitty gritty is still to come. I will pass on all the information about genetic factors, Aimee's particular variant, drugs, future planning, ect as I digest and as I read through the most recent studies and trials. 

Meanwhile, here is a picture of us nervously waiting for the doctor on Monday. 

11.18.16 Yesterday's Appointments

Aimee had a full day of appointments yesterday. We started out with a renal ultrasound, which is to monitor kidneys and bladder. Next, we met with her respiratory pulmonologist. He was pretty concerned about the continuing ulcer on her nose. We also discussed the plan for this sick season, getting stocked up on supplies, and determining what specific numbers mean we need to get doctors involved. It really gives me peace of mind to have these criteria agreed on between us ahead of time. From this clinic, Aimee was sent to the lab for a blood draw to check electrolytes and carbon dioxide levels. We then met with the Urologist to review the ultrasound findings, which were perfect. We increased the urinary cath size and finally ran over to the pharmacy for meds. 

Monday is the long awaited appointment with the genetic neurologist to learn all about KCNQ2.

11.17.16 Another Language

Waiting in the radiology department for an ultrasound. A little girl has come to sit across from us with her dad. She is moaning and making sounds like Aimee does. Aimee is so excited. She is talking back to the girl and kicking her feet whenever the other girl makes a sound. 

This little connection makes my heart happy. 

11.14.16 Home

Aimee finished her study and we made it home. Though last night was a really rough night, even by Aimee standards. 

The EEG gave really good information and the preliminary review showed the best results she has ever had. We will know more in a week or so about the actual findings. 

11.12.16 EEG

Today is a much improved day. It has been a frustrating stay, because typically when you are admitted the job of making decisions and caring for the child goes from the hands of 1-2 parents to a committee of 10+. This stay was planned and she is perfectly healthy. Simple, daily tasks must be approved. It took hours to get her on bipap, because I had to consult with the neurologist, the wound care specialist, and the respiratory therapist first. I had to get special approval from the dietician and the formulary nutrition room to pour the prescribed formula liquid hope that I brought into the feeding bags without diluting it. They insisted that it would not go through the pump, which is the same pump I use at home and that if any water was added I would not be allowed to mix it. It would have to be done in the nutrition room. 

Now that we have established what is allowed and had bandaging for her nose wound approved, ect it is much more calm. The staff here are generally very helpful and friendly. Once they understand that I actually know how to take care of her, they start to give some freedom. I know they are just operating under the rules that are there to protect them and the kids. 

Wore herself sobbing through all the gluing of electrodes. Hoping to find little seizure activity after her most recent med increase. 

11.11.16 EEG

Aimee recovered finally from her cold and made it back to school on Monday and Wednesday. We are now settled in at Children's for an extended EEG to check on seizure activity. We'll be here for a few days. 

We have only done one of these extended EEGs one other time. Similar to the Sleep Study, we have to bring all our own things, including diapers, machines, meds, food, ect. It is pretty challenging and a good reminder of why we have decided to no longer travel with Aimee. 

11.2.16 Mending

Aimee is recoverying from this first cold of the season that started with that day of seizures at school a few weeks ago. We are working to slowly move her back to her normal feedings and routines. She is working with us to get her airway cleaned out and to rid herself of some eye infections. The one little challenge we are having in particular is an open wound on the bridge of her nose, which was created by extra bipap use. It is really difficult to get rid of skin breakdown on her face, because she still needs to use the bipap, still needs the cough assist, and because she keeps reopening it with her waving arms/hands on her own face. We are making an (unauthorized) attempt to put her on oxygen only for a couple of nights to allow the wound to heal. Praying her brain remembers to keep breathing and that her wound is finally able to heal. 

10.21.16 Gem in the Muck

In the middle of the muddiness of looking back at the past, there is one shimmering light. 

We feel a responsibility for not recognizing Aimee's seizures early on and having them treated. It is heartbreaking. Yet, this new information is creating a hope as well. In the past we have been hesitant to ask Jesus to heal Aimee. When we prayed it was more along the lines of protection and maintaining health. We didn't know if this was what God intended when He designed Aimee's abilities. We couldn't ask Him to heal her brain, because as far as the information we had, it wasn't broken. We thought, based off the information given to us at that point, that there was some type of genetic mutation that caused all of her symptoms. We thought it was static. God made her this way. We love her. We're thankful that He made her. 

Now, we have this new understanding. There is a change in her genetics (though we don't completely understand it all yet). This is causing a processing error in her nerve communication basically. It is messing up the potassium channel and has caused seizures. We still don't know how much of Aimee's limitations are because of the seizures. We don't know how well her body would have communicated if we had stopped, slowed down the seizures earlier.

What we do have now is this new ability to pray, to ask God to restore Aimee to His design. What does that mean specifically? I don't know yet. I think it means communication. I think it means more ability. I think it means that her sweet spirit is intact and the way He designed it to be, but her brain and body have been hindered from their true design.

Will you pray with us?  

(Aimee meeting Caleb's new birthday bunny)

10.20.16

Not our very best week here. Aimee had two longer, consecutive seizures while at school on Monday and then she was unresponsive. The boys and I rushed in to pick her up. Since then she hasn't given me consistent clues. Urine retention, decreased temperatures, discomfort, difficulty with feeding rates, some increased phlegm, eye drainage. A few times I've thought maybe UTI. Other moments I think sinus infection. None of her symptoms are extreme and she has not continued to have increased seizures. She is not herself though. Just keeping her here and keeping our eyes out for any abnormalalities. Here is hoping it was just an off couple days!

10.11.16 Painful Regrets

It is a lovely morning outside, but here inside the house it feels oppressively dark and stormy. I am sitting nauseously reading over paperwork from Aimee's Neurology appointment yesterday. This was not the big appointment where we learn all about KCNQ2, but because there are treatment implications we met with the epilepsy specialist. She gave us copies of the research results, as well as, a copy of findings for treatment of KCNQ2 encephalopathy. There is limited information as this severe version of this mutation is really rare. According to this research from Meyer Children's Hospital in Italy, there are 50 patients identified to date internationally. 

We had given up on finding answers for Aimee, so reading an overview of 15 kids with the same condition is surreal. There is much to feel. At this moment though, what is hitting hardest in reading this material is the repetition of statements showing that early recognition and treatement may be important for reducing neurodevelopmental impairment. 

2 of the patients in the study were seizure free due to treatment within the first 2 weeks of life. These 2 only had mild cognitive impairment. 

All of the patients seizures started between day 1 and day 4 of life. All of the patients seizures recurred quickly with discontinuation of drugs, including status elepticus. 

It is hard to type or think these thoughts, but it is possible if we had recognized Aimee's clues early on, if we had been concerned and taken her in sooner... it is possible we might have prevented some of her impairment. There is no going back. This is sickening and painful. Oh Aimee... I didn't know... 

10.6.16 Confirmed

Though we have yet to receive the official   diagnosis, the Neurodevelopmental doctor did let us know that the clinical testing confirmed the genetic research. KCNQ2. Letters that we had never even seen put together before. In November we will learn more from the Neurogenetics clinic. 

In other news, the trial of the irrigation enima was a major failure. This means that our remaining options are all surgical. We feel that we can continue with the prescription enimas for now, but are concerned about what comes next. The medications are already becoming less effective even in adult doses and combined. 

9.28.16 Back At It

Back from a midwest whirlwind weekend and feeling more whole than before. It was good to be in that old place and reconnect with a time before. 

And now we're back at it. Spent time in clinic this morning to get new AFOs fitted, to have a bone age x-ray done, and to meet with Neurodevelopmental. 

Aimee finished the day with a heart-to-heart chat with her Daddy. 

9.23.16 Life Update

Excuse the long delay on updating all of you on Aimee's life. This past couple of weeks have included several appointments and the start of a new school year. 

A bit of a rocky start to 2nd grade with a few bad days in already due to a severe 8 minute apnea just prior to school, some seizures, and a missed meal. Hopefully next week we will get things right and consistent again for Aimee's sake. 

Yoda has started coming to appointments with us, which so far has gone well.

No changes with Aimee's sleep clinic appointment, though we are considering requesting sleep medication for her. She has a difficult time keeping track of night and day recently, which means midnight dancing and afternoon snoozing. For Aimee. Not me. 

We met with Aimee's Ortho doctor who originally corrected her club feet. Due to Aimee's surgeries and me not being convinced they were doing anything, we haven't been using Aimee's AFO braces. And... I was wrong. She has lost 15 degrees of movement. So back to bracing, though only 12 hours a day. 

At her GI clinic appointment it was decided that it is time try using an irrigation enima system as we are having a difficult time still. This is basically multiple saline colon flushes. It might work. 

And, as we speak, I am sitting at Sea-Tac airport waiting to board a flight back for the Hillsdale College Homecoming. This is a big deal. Praying for a peaceful, smooth weekend for Ed with the kids. He will have help, but it is a heavy load for him to carry. On my way! 

8.29.16 Public Access Official

The tedious task of training is done. It was a long week up in Bellingham at Brigadoon Service Dogs.

Saturday Yoda and I officially passed the test for public access and he earned his vest. 

As a special treat, my two nieces and I took Aimee out to get her first make-up, gave her a little make over, and took some pictures at the park. 

Now comes the road of allowing Yoda and Aimee to bond and teaching him to alert to seizures and apneas. Here they are at church together yesterday. Bonding in a nap.

8.19.16 Bringing Home Yoda

Aside from a short time stuck on the side of the road again in the hot weather (Thank you vapor-lock prone van), we had a successful retrieval of Yoda. He is here to learn that Aimee is his new job before we begin the ADA training on Monday. More to come. 

Napping together already.

8.18.16 The Right to Bitterness

Aimee and I sat in the cafeteria at Children’s between appointments this last week. We both were eating lunch. She having a bolus of Liquid Hope while snoozing. Me eating the decent cafeteria fare available while reading a book on my kindle. It was a longer break than normal. 

We have a normal here. We are regular visitors with semi permanent passes that we only have to renew 4 times a year. We have our favorite parking spot. We have our favored route and enjoy chatting with the employees that we see when we are here. We know which clinics will be comfortable to change diapers in and which we have to visit the 7th floor bathroom that has a hi lo table to use beforehand. We are regulars. 

Yet, this visit, following the news of Aimee’s research results, I was repulsed by this place. The wounds have been aching freshly. It is all raw. All I can think and feel is the pain of the beginning. Like we’re starting the journey all over again. I hate it. I don’t want to be on this journey. I don’t want Aimee to be here. I don’t ever want to be at this hospital again. Sitting here with these people. All of us undeservedly here. All of our children undeservedly here. None of us belong here. 

There is pain. Sometimes anger. A lot of awkward moments. Questions from typical kids. Sideways glances from adults. So many people who don’t know how to talk to us anymore. So many moments when I don’t know how to talk to them either. Them. With their daughters and sons. Them with their lofty parenting ideals. Them with intact dreams. Them. 

Bitterness.

The pain in life is real. We all have pain in the living of it. The overwhelming stresses and the undeserved suffering. There is certainly no health in denying the hurt and struggle. But can we be honest without being bitter? Can I? 

Bitterness is a lonely place. We have a right to be bitter perhaps. Bitter for our losses, our betrayals, our health, our lot. BUT we are given a choice. Even while justified in anger and hurt, we get to choose between spite and graciousness. Between malice and tenderness. You and I, we get the constant choice to lay aside bitterness and seek after the gift of hope instead.

“I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God.”

Ephesians 3:16-19

8.9.16 Probably

Here is the probable scoop.

This past couple of weeks I have been in communication with the Genetics and Neurogenetics departments at Seattle Children's regarding DNA research testing done over the past 5 years for Aimee. This afternoon, I spoke with the Neurogenetics doctor that Aimee last met with in 2011.
(Click here to read the post about Aimee's previous appointment with this Neurogenetics Doctor)
(Click here to read the results of that brain MRI from 2011) Due to a clerical mistake, Aimee's DNA was entered twice for research testing. Both came back with the same results, which indicate a probable mutation, or change in the genetic code, at a well known epilepsy gene KCNQ2. The sequence change that they found in Aimee's DNA was one that had not been seen before. He said they have known about this gene, but only been researching it for a couple of years and that it takes about 10 for them to fully understand it. In particular, there is a fair amount of research for gene specific epilepsy treatments targeted to the particular protein involved.

Okay, so the bottom line is Aimee's DNA will go into a clinical lab for confirmation of this finding, but PROBABLY this is the answer. And possibly it will have treatment implications. We should have an answer from the lab in about 6 weeks time. We will meet with the Neurogenetics Doctor in November to discuss the implications of this finding in greater detail.

From what I understand so far, alterations in KCNQ2 refers specifically to an interference with potassium as is exits a cell through a pore in the cell membrane during a transmission of nerve signals. The nerve signal triggers this reaction where the channels open for sodium to come into the cell and for potassium, a positively charged ion, to go out. The interference with this reaction either stops or messes with the transmittable electrical signal. The range of delays and seizures is correlated to how much this process is dysfunctional. This epilepsy gene is particularly characterized by an onset of seizures between day 2-8 after birth, which... we couldn't say for sure if Aimee had seizures then, but looking back we may not have recognized them. As we didn't know that she had seizures until later, they did not consider this gene during earlier testing. Among other unknowns, it is unclear if the prolonged presence of seizures causes in increase in developmental delays or not.

At this point there are a lot of questions to ask and still more waiting to do. We will hopefully have more information and details to share through the coming months. Hopefully we will also have a clearer explanation regarding this gene than my phone call notes can provide. ;)

8.1.16 Yoda

When Aimee was in the hospital in December she was recommended by the staff as a canditate for Make-A-Wish. They submitted the request and we met with them in February to discuss what Aimee would like as a wish. We had a couple of ideas in mind, knowing that the most popular wish of a trip was not an option currently and wouldn't be Aimee's choice anyways. We narrowed our choices down to 2. Our top request was for a small dog, possibly an alert dog, but at least a companion dog that could sleep with Aimee and sit on her lap. We hoped a dog would provide her with comfort, help reduce anxiety, and just be a little friend. 

Saturday afternoon Aimee met and was matched with a dog through Brigadoon Service Dogs named Yoda. He is 5 lbs and a trained alert dog. He will go through ADA training/test with me as his handler at the end of August and come home with Aimee after that.