Sunday, December 23, 2007

Merry Christmas

Dear Wonderful Family and Friends,

As the year comes to a close we reflect back on the days of 2007. It’s been quite an adventure for our family! Ten major events mark the memories we’ve made.

Our little blond munchkin turned one in March! What a special celebration. Josiah has brought so much surprise and pure delight to our home. We truly praise the Lord every day for allowing us to experience this child’s life. Kissing his soft cheeks and receiving one in return can only bring big, happy tears and a bursting heart! He has mastered over 70 signs which helps him to express his wants and needs. Along with these signs he is now speaking pretty clearly, which is lots of fun!

In March we also took a trip to Pittsburgh for a second evaluation with the country’s most recognized cortical vision impairment specialist. Her advice, encouragement and professional recommendations have helped us get several things that Abby needed. The most exciting one is that Abby now has a one-on-one aide in the classroom! The intention of having the aide is to provide someone who will bring language to Abby, as well as a consistent learning experience. The Deafblind Intervener model is very new to the school system, so we are working together with them to create the most appropriate environment possible! We are praying for continued sign language comprehension and expression for Abby. She is consistently and appropriately signing “up,” “eat,” “more” and “all done.” We are told her classmates enjoy her presence and miss her when she is absent.

In April my mom and I took the kids to Montreal Canada to embark on a new journey. While in Montreal we learned a new manual therapy technique to use on Abby. Because of Abby’s CP she is unable to sit up, crawl or walk. This therapy will hopefully allow her to develop a stronger core structure so she can eventually gain more function. It demands a large time commitment every day, but we are already seeing physical results after only 8 months. It’s taken some effort to rearrange our family routine to fit it in. Abby seems to enjoy it and becomes very relaxed… most of the time.

Patrick is really enjoying his new job at NASA! Another one of this year’s praises. The Lord provided the exact job we had prayed for. He loves the challenge.

Abby has continued to struggle with reflux. To make a long story short, the G-tube feedings became too uncomfortable for her. After undergoing an upper GI exam (including sedation and a scope), and discovering significant esophagitis we knew something needed to change. We resorted to a GJ-tube which feeds a slow drip of special formula into her intestines, bypassing her stomach. It has helped so much. She is slowly gaining back the 4 lbs she lost during the last 2 months.

The beginning of Fall brought a sad day for our family. We lost our golden retriever, Hummer. He was such a big part of our lives. We really miss him, especially now that our Christmas tree is up and he’s not here to explore it.

October took us to California where we enjoyed a great family reunion with my mom’s family!! The airplane trips were an adventure in themselves. It was so wonderful to travel with my sister, Christy, and her family. It was Papa’s 80th birthday celebration, complete with aunts, uncles and cousins. The kids got to meet everyone and spend quality time with Papa and Patrish, which they all loved.

Our final event included surgery for Abby. Early this month Abby had her Vagus Nerve Stimulator implanted. It sits under her skin right below her collar bone and has wires which wrap around the vagus nerve in her neck. Her seizures have escalated out of control over the past year, and this is the next step of treatment. Now that it has been activated the implant sends small electrical pulses every 5 minutes. It interrupts the electrical “storms” happening in her brain producing the seizures. We have a magnet that we can use to wave over the device during a seizure, causing an extra “dose” of pulses to be discharged. It actually works to bring her out of a seizure more quickly! We hope to wean Abby off some of her seizure medication in the New Year.

Each and every day we turn Abby (and all the worries) over to the Lord. Only He can bring comfort, healing and renewal to our girl. If we’ve learned one thing through the past four years, it’s that we need our savior to intervene on our behalf daily.

Christmas is always a special season for our family. This year just like all the previous ones, we are humbled by the Lord’s provision for us. We are surrounded by His love sent to us through family and friends, near and far away.

Draw near to the Lord in the coming New Year, for His love endures forever!


Patrick, Patty, Abby and Josiah

Wednesday, December 19, 2007

Activation Day!

Monday we took Abby to Dr. M's office to have her VNS activated! We were excited and anxious as we waited for him to program the device. Abby sat in her chair seemingly aware that something important was about to happen.

The Dr. put his programming "wand" over her chest where the implant sits and started the electrical impulses. We watched her closely for any reaction. Honestly we were a little afraid she might get scared and wig out! Instead she sat very still and had that look of concentration on her face. She did feel the stimulation but wasn't bothered by it. Whew.

Since Monday we've noticed very subtle behavioral signs when she receives the impulses. Sometimes she gulps, has a gag or cough, and once or twice has started "singing" and we noticed a higher pitch to her voice. Most of the time we can't tell it is delivering the impulses.

More good news. Yesterday she had 3 big seizures during which I dashed to grab her magnet. After briefly waving the magnet over the implant I watched as she slowly came out of the seizure! I almost couldn't believe my eyes. Abby seemed to be surprised too! She calmed down quicker than usual, although she was still very sleepy afterwards.

I had to sit there and just thank the Lord for giving us some way to help Abby. It's not a cure, but it sure beats watching her helplessly as she suffers through another terrible seizure. Praise Him for answering our prayers.

Here's Josiah listening to the "IPOP"... as he calls our Ipod. It is really funny. We are amazed at how quickly he figures things out. Before we knew it he was unplugging the ear phones from the Ipod and finding other appliances to plug them in to! Yikes.

Wednesday, December 12, 2007

VNS Surgery

Abby's surgery Monday went very well. She did great during the procedure and is now resting at home. She has an incision on the left side of her neck, and one on the upper left chest, just below her clavicle. The implant itself is quite large and clearly visible under her skin, but we knew it would be.

Today we are trying to stay ahead of her discomfort by making sure she gets her pain meds on time. So far she's been resting ok.

The device has not been programmed yet so we won't know if it will help her seizures until it's turned on. We've been told that every child is different in the way they respond to the Vagus Nerve Stimulation therapy. Some show change in seizure activity immediately, and some gradually see improvements over time.
Abby is scheduled for her implant to be activated after the first of the New Year. We are really praying it will help her! The potential of seizure relief gives us a lot of hope.

Thank you so much for those who prayed for Abby. We can feel the Lords' peace when His people bring our family before His throne.

Tuesday, December 4, 2007

J's First Hair Cut

Josiah got his very first hair cut last week. It was hard to see his baby curls fall, but the end result is just so darling! He really looks like a little man.

Our handsome boy.

Thursday, November 29, 2007

Surgery Consult

Today we saw the Pediatric Surgeon at Women's and Children's hospital. We explained Abby's seizure situation and her extensive medical history. He was a very nice man and agreed she needs the VNS implant soon. He shared some of his experiences and told us he implants about 1 child a month! This was more than I had expected.

Abby's placement surgery is scheduled for December 10th, nice and early at 7am. As much as I want to stop these nasty seizures, I never enjoy the process of surgery. This will tip Abby's surgery number to 13. Every time I'm told to fill out those forms at the dr.s' offices I have to rehash all the difficult experiences she has endured. The surgery, the vent time, the infections, blood transfusions, brain injury and diagnosis'. Then I watch as they point out all the scars, trying to make sense of it all. Never something I enjoy doing.

But, as it is, we are ready for this to happen. Now that our girl is even more drugged after adding a third med this week, we look forward to yanking her off of them as quickly as Dr. M will allow. Looking into her little eyes I can see a haze clouding over her sweet, hiding personality. I'm ready to see my girl clearly again and move forward with the normal things of life.

Will life ever settle down to normalcy? I don't think I will wait any longer for that to happen, but will stumble ahead while I beg the Lord for His mercy and grace. He promises that He will equip us with every gift we need for this life... I just need to dig deeper and proclaim that His promises are always true.

Josiah worked so hard the other day helping mommy rake leaves outside, he forgot to finish his lunch!! It was so cute I thought my heart would burst!

Thursday, November 22, 2007

EEG Results

We heard from the neurologist about Abby's 24 hour EEG results. It sort of caught us off guard a bit. During the time Abby wore the electrodes she never had a seizure (that we saw). We were expecting to have to repeat the test in order to catch one of her many (usually frequent) seizures.

The nurse said Abby’s results were "abnormal," which isn't different from her previous tests. She told me it recorded "frequent spikes in her brain waves, indicating seizure activity." When I mentioned that we never actually saw any seizures during the test she told me that Abby is having seizure activity even if we don't see them.

So basically Abby is having between 5-30 seizures every day, in addition to those we can't see. We never imagined this could get so out of control. It's very difficult seeing her seize and then get so upset, knowing she must be scared and confused.

We go to see the surgeon next Thursday to discus the VNS implant.

We spent last weekend in Knoxville with our families. My Aunt Jodie took some precious pics of Josiah outside in the leaves. Too cute!

Friday, November 16, 2007

Fall colors

Another cold day in November. My favorite time of year. I love the colors on the trees and the cold wind.

The kids are getting over some sort of stomach bug. Abby went back to school today. I've been communicating with Mrs. V (Abby's teacher) about her seizure activity and subsequent lethargy and long naps she's been taking. Today they counted the startle episodes (myoclonic startles) that Abby had while at school... 24! No wonder the kid is knocked out and irritable.

She had 7 grand mal seizures Thursday. After she started having stomach symptoms and fever it explained the sudden increase. She actually had 3 of these during the night, which worried us. I kept a very close watch on her fever this time and treated it quickly.

We have an appointment with Dr. G (a general pediatric surgeon) about the Vagus Nerve Stimulation implant on November 29th. This will give us a chance to find out more about the procedure and to ask more questions.

It's getting to the point where we feel forced to do Something!

Josiah is getting so big. He grows more every day, and adds words to his vocabulary. He loves Abby and that is what we need to see these days.

Friday, November 9, 2007

The 24 hour EEG

Abby endured another test this week. The difference between this test and all the others is, we had to take this one home!

Numerous electrodes were attached to Abby's head, measuring and recording brain waves for over 24 hours. We were hoping it would "catch" all the seizure activity she has been having, both the grand mal and the newer, startle seizures. Although the previous week Abby had over 15 seizures, she did not have any while she wore the electrodes, except for a possible startle episode.

Now we wait for the neurologist to review the information.

A story in pictures...

Friday, November 2, 2007

Love - Hate Relationship

Abby has a long standing relationship with tubes of all kinds. Endotracheal tubes, IV tubes, oral gastric and nasal gastric tubes. They have given breath to her lungs, medicine to her blood and food to her stomach. Once Abby's reflux battle kicked in full gear we turned to a gastrostomy to feed her.

Yesterday we were introduced to yet another tube... the Gastrojejunal tube. As much as we've been dragging our feet on this one, Abby has been suffering through every feeding. We have exhausted every medication and several, special formulas. We even tried an extra special diet of blenderized whole foods. Nothing brought the relief she needed.

Now we have a pump, feeding bags and IV pole following Abby every where. Soon I'm sure it will become second nature to pick up the pump and tubes along with our girl. In the mean time, we are trying really hard not to trip over or step on her tubes!

It's new for Abby too. It has made her tummy very upset. Something new; more changes. We only wish we knew what she was feeling so we could better anticipate her needs. She acts hungry, but we can't feed her the way we are used to.

Lord, please help Abby get used to this new tube more quickly than we do, so that her body can heal.

Sunday, October 28, 2007

Good Bye Friend

"Pooh, promise me you won't forget about me, ever. Not even when I am a hundred."
Pooh thought for a little.
"How old shall I be then?"
Pooh nodded. "I promise," he said.
Winnie the Pooh
The House at Pooh Corner

Today we lost a friend.
Hummer was a gift to me from my sweet, new husband when I graduated from nursing school. He was the pudgiest, most adorable puppy I had ever seen. I had always wanted a dog... but especially a Golden Retriever.

Today we reminisced about our life with Hummer. He did everything with us. He camped with us, hiked with us, swam with us. He sat by my side when I was sick on the couch. He played "protector" when I was alone in the house. He sat while we cried next to him when Abby was born. He gave her gentle kisses when we finally brought her home. He sat attentively near me when I was in labor with Josiah... and then gave him kisses when he came home.

Things I (Patrick) remember:
Staying late with me at graduate school when Patty was at work. Chasing the laser pointer until he could no longer stand up. Kissing Abby and Josiah. Staying outside the grocery store while I shopped, except when he decided to come and look for me. Jumping off of waterfalls when he thought Patty was in trouble in the water. Sneaking into our bedroom at night to guard us as we slept. Playing with Josiah by taking and returning his cow, then letting Josiah taste his golden fur!

Most of our memories include Hummer in some way. We hoped to see Josiah throwing the ball for him in the yard. We had even thought of sending Hummer through special training so he could become a canine companion for Abby.

It just wasn't meant to be. He will always be a special part of our family memories.

Hummer, we promise we will never forget you.

Friday, October 26, 2007

Hospital Rounds

Unfortunately for Abby we have become even more familiar with the staff at Huntsville Hospital.

Last Friday evening while I was out shopping, Abby spiked a high fever and went into a prolonged seizure. She had been running a fever for almost 6 days with no other symptoms. By the time I got home she had been seizing for more than 10 minutes and had not slowed down even after my mom had given her the Diastat. I was so thankful my mom was with her! She has such a calculated, calm presence of mind in times of crisis! Thanks mom for taking such good care of all of us!!

After giving Abby Tylenol very quickly for her high fever I rushed to the ER with my poor, baby girl struggling to breathe in her car seat. The ER staff immediately started working on Abby giving her more than 6 doses of different drugs trying to stop her seizure. She would stop temporarily, resting for a minute or two, then start up again. CT showed no changes in her ventricles, no abscesses in her neck. X-ray showed clear lungs and blood results showed no infection. Probably a virus.

Two hours after we arrived at the hospital Abby was finally resting, although her breathing was affected by all the heavy medications she had received. They moved us to the PICU where we spent the night, listening for Abby's breathing and watching her heart rate and O2 sats on the monitor. The next day she was stable but extremely lethargic, and for the most part knocked out! We convinced the doctors that we would do better at home, and were discharged early Saturday evening.

Monday things were not any better, and Abby's fever had climbed higher. She slept, and slept and didn't move unless we moved her. By early evening she had spiked another high fever and was struggling to breathe. My mom helped hold her upright while I bulb suctioned the mucous building up in her throat. It didn't help. As we watched her skin start to mottle and then turn bluish, we decided it was time to head to the ER... again.

This time she stabilized more quickly and was able to rest after another dose of Motrin and some IV fluids. We even got to see the nurse stick her vein using their nifty Vein Finder machine! It shone a green light on her skin which made it possible to see her veins clearly!! He got the IV in on the first try. After Friday night's events, and more than 5 pokes, we were not in the mood to see her become a pin cushion again.

Another unchanged CT, mostly clear x-ray and clean spinal tap. We moved to the 4th floor to get some rest. After only being on the floor about 30 minutes Abby spiked another high temp (103.6) and started acting like she was going to seize again. I started to panic until I looked at the monitor and saw that she was breathing fine, although her heart rate was high due to the fever. More Tylenol. Finally at about 4:30 am she fell asleep.

Next day we finally found the source of the fever. She had pneumonia! We were strangely relieved to hear the news, knowing at that point it wasn't something more serious.

She's home now and on antibiotics. Her tummy is upset, she's still coughing some, isn't taking her feedings well and she seems unhappy some of the time, but at least she is home. Praise the Lord for antibiotics! He is good to our family and still holds us in the palm of His hand.

As much as I like having her on monitors so I can see that she really is ok, it feels so much more normal to be home. I think Josiah is settling into his routine again too... except now he can't stand for me to leave his sight. Makes me feel loved!

Here he is goofing off under Abby's bed in room 414.
Poor guy had to find something fun to do!

Sunday, October 14, 2007

Tests, tests and more tests

Health issues with Abby seem to come in waves. The past few weeks have been full of tests and worries about various problems.

The increase in seizures still hasn't been answered, although Abby did have another CT scan done this week which revealed no changes since her last scan. This is wonderful news! We have been increasingly concerned about the combination of her new seizure activity and recent, unexplained irritability. After missing a neurosurgery clinic appointment due to a canceled flight from California (another long story), we were finally able to confirm that her shunt malfunction is not the culprit.

Reflux has always been one of our enemies, although we never realized how long and how seriously it would affect her life. Thursday our GI doc performed a Gastroscopy (upper GI endoscopy) on Abby to check for damage from the reflux. The test revealed significant esophagitis. We got a picture of it and you can tell it is red and inflamed.
Her stomach looked fine; no ulcers. His recommendation was to place a gj-tube. This would replace her button with one that has two ports: one for feeding into the stomach (g), and one for feeding into the jejunum (j). Abby would be connected to a feeding bag and pump for 12-18 hrs a day. It would deliver formula at a slow drip into the intestines, bypassing the stomach. This suggestion raises so many emotions for us, the main one being a huge step backward from normalcy.

Because we want what is ultimately best for Abby in the long run, we asked if we could try the blenderized diet to see if that might relieve some of her reflux. He agreed to give it a 4 week trial before moving forward with the gj-tube. We've started blending up regular food for her! It feels so good to be able to give her good nutrition instead of just formula. So far she is tolerating it well. One main advantage is that this diet is much thicker which will hopefully prevent her from refluxing.
We've spent the past month or so introducing Abby to one veggie or fruit at a time to make sure she didn't have any bad reactions.

Abby has another EEG scheduled for the end of this month. This one will be longer (24 hrs) and will hopefully pick up the seizure activity she has during the day and at night. We are hoping this will give us the information we need to make the best choice for further treatment. Our Neurologist is recommending the Vagus Nerve Stimulation Therapy. As I've mentioned in previous posts, this requires minor surgery and an implanted device.

We continue to pray for wisdom. It is very hard to know what to do sometimes.

ps. The picture is of the kids in their new bike trailer! It has been so much fun riding together around the neighborhood.

Monday, October 1, 2007

Dream Job

Today marks a very important day for our family! My husband Patrick starts his dream job.

Patrick and I first met the summer before I started college. We began dating and eventually got married while in college. It was fun supporting each other and struggling together through those years. Patrick decided to endure more of it than I could stand, so he continued through his masters and on to get his PhD. Yikes, there was a time when I thought he would be in school for a very long time!

I always knew his dream was to become an Engineer and eventually work as an astronaut. Our first step was to move to Huntsville so Patrick could pursue this mission by working for NASA doing his post-doc through a contractor. He continued working as a contractor after the post-doc position was completed, looking to one day become a NASA employee!

It has finally come true for him. He will now be wearing a Gold badge to work as he continues his project to develop part of the new Crew Launch Vehicle that will one day fly to space. Most of what Patrick does at work I don't understand, but I do know that today is a very special one and I'm so proud of him for sticking to his dream.

The Lord has been so good to us. He cares about our desires as well as meeting our needs.

Wednesday, September 26, 2007

Abby's EEG

Yesterday we took Abby to have an EEG (electroencephalogram) at our neurologist's office. They attached numerous, colorful wires to her head while I watched her brain waves dance across the screen. She was pretty calm considering how much she protested to the placing of the electrodes!

The EEG was ordered because we have been noticing Abby having new seizures, and also some increase in her typical seizures. From what we've read and researched her new seizures look like they are probably Myoclonic seizures. They look like she suddenly gets startled and throws her arms out to the side and seems disoriented for a moment. I can tell it is a seizure by the look in her little eyes.

Abby's typical seizures that we have been seeing since she was 11 months old are Tonic-Clonic seizures. They look more severe. Every time she has one of these it drains a little piece of me, as I watch my girl wilt into a drowsy state.

We also think she might be having Absence seizures. Her teachers have mentioned that they are seeing these as school.

Dr. M's nurse practitioner showed us an actual Vagus Nerve Stim implant so we could look at it. It's bigger than we had thought. We also had the chance to ask more questions about this form of epilepsy treatment. It seems so invasive but maybe it could really help decrease Abby's seizures.

Now we just wait for the results of yesterday's EEG. Next Tuesday we will be seeing Dr. M again to discuss the results and talk about what we need to do next. He might want to do a longer EEG test that will provide more extensive information as it will show Abby's brain activity over a 48-72 hour period. We will also be talking more about the VNS therapy option.

Praying for wisdom to know how to help Abby in this issue and all the others that are weighing heavily on our hearts.

Wednesday, September 19, 2007

Preemie of the Month!

September is always a special month for our family. It's full of birthdays, new beginnings and the start of some beautiful, Fall weather! I love the Fall, I think it's my favorite time of year (aside from Christmas).

Abby's birthday has changed this special month for us. It has become a month full of memories, bitter and sweet. This year she turned 4, which neither of us can believe! As a nice little extra celebration Abby was featured as Preemie of the Month in the Preemies Today newsletter!! I guess it only fits that the article came out this month, Abby's birthday month. Several weeks ago I was asked to share Abby's story; to share what our journey through prematurity has been like. I'm always happy to tell her story, to share how the Lord has worked in the midst of terrible helplessness... but I can rarely do so without shedding a few tears.

So, for those of you who are interested to read about our Preemie of the Month, please visit This will take you to the article.

On a side note: Saturdays in the Fall usually include dressing the kids in their UT duds, so we feel like we are cheering on our home town, football team!! Both of our families are devout UT fans, so I suppose we feel closer to them when we are showing off our Tennessee Volunteers' pride! Plus we just think the kids look so darn cute in orange.

Thursday, September 6, 2007

Abby's new button

Tummy trouble. Since the very first week of Abby's life we have been struggling with this problem. At 7 days old she got NEC and perforated. She didn't start actual feedings until she was over a month old, and even then she had trouble. NEC attacked her gut again in November with a second perforation event which required an illeostomy. She finally had her "intestines put back together" before we took her home at 6 months of age... we had never been sooooo excited to change a poopy diaper!

Then the reflux kicked in full force. First a nasal gastric tube for 3 months, then a fundo surgery along with our little friend, the g-button. (In this first picture Abby is sporting her BARD button) This was the key for good nutrition and growth for Abby. After several months she was finally on the growth chart.

Abby is still growing wonderfully, although those tummy troubles have never left us. The reflux enemy rears his ugly head often, which makes for difficult feedings and the back tracking of oral feeding success. These past 6-9 months Abby has shown increasing discomfort during tube feedings. After many doctor visits, suggestions and tweaks we are continuing to look into the "why" of it all.

Perhaps it's still reflux, despite her adult size dose of Nexium. We are on a trial run of a recently increased dose before we dig deeper to find the culprit and fix it if possible. I just can't describe how unnatural it feels for us to be 'forcing' (not literally) food into our child when it seems to make her so miserable. That being said, not every feeding is this way. It's really a mystery to us.

She got a new g-button (Mic-Key) yesterday which has become a welcome change. Her feedings and meds flow easily through it with out clogging. We are hoping to eventually switch to a blenderized diet... one which actually includes real food, blended up.

As you can see, it was a long day. Abby was a bit traumatized by the procedure which was painful for her. She had a seizure in the car afterwards and then promptly fell asleep. Josiah didn't want to be left out. My sleeping cuties.

Monday, September 3, 2007

Happy Birthday Abby!

Today is the big day... Abby turns 4! We can't believe it. Could it really be true that it was 4 years ago our tiny girl came so early? So much has happened in these past 4 years, but it still feels like it was just yesterday we were meeting Abby for the first time.

Sweet darling we love you more than words can say. God gave us a precious, unique gift when He gave you to our family. How can we thank Him enough?! You bring new meaning to our lives every day, and cause us to look towards our Father more frequently than we might have otherwise. You are our precious angel.

Happy Birthday Sweetheart!

We would love to collect messages on this 4th birthday so we can add them to her special book. Sometimes we go back and read through all the encouraging notes we received from the early days... it would be fun to read new ones to her!

Thanks to Rachel Coleman, creator of 'Signing Time,' for the use of Abby's birthday video theme song, Shine.

Saturday, September 1, 2007

Hummer's new look

This summer has been a typical, Alabama summer... HOT!! Our poor pup has suffered from this heat more than he has in the past. He started having grand mal (tonic-clonic) seizures! We couldn't believe it. After taking him to the vet several times to get checked out we were informed that this is not totally unusual for a golden retriever to start having epilepsy as they get older. Hummer is only 6 yrs old, but I suppose that is about middle age for a dog.

We traced all of his epileptic episodes to times that he was probably over heated from being outside. Of course he always had plenty of water, and a swimming pool to boot!

Now he has become a primarily "inside" dog... with a new hairdo! Check him out! He seems much happier, and of course much cooler too.

Friday, August 24, 2007

Home Again

It feels good to be home! After several days of doing laundry and getting the kids settled, we're starting to get back into the groove of our daily activities.

The ABR therapy training in Chicago went really well! Our sessions consisted of one on one time with the trainer who showed Patrick and Grandma how to do ABR!! It was exciting for me to hear the trainer tell us we have a "good team!" Team being the key word. (smile)

We met some nice families and enjoyed sharing stories with each other. They all had much more ABR experience than we have, so it was neat hearing about the improvements they have seen in their kids.

The trip was long but we had some fun family time with Papa and Grandma. Josiah especially enjoyed his alone time every morning with Papa. We all enjoyed a beautiful afternoon at the zoo, and a visit to an IKEA store.

Abby's therapy prescription now includes 4 exercises. We will continue the chest (anterior thorax) and top of the shoulder exercises. The trainer introduced us to two new ones: Jaw/skull division and lateral neck. Abby really disliked these two because they involved holding her head still which she can't stand!! I've been surprised and pleased to discover that she tolerates them quite well now that we are home.

Once again we are slowly building up our hours of ABR every day, but now Daddy's helping too!

Wednesday, August 15, 2007

Summer ABR Clinic

Well, we've made it to the first follow up session for Abby's ABR therapy! Now that we've gotten a good taste of what this involves, we are ready for more training and maybe some positive feedback on what we've accomplished so far.

Although our total ABR hours aren't even close to what was recommended, we feel that we've done our best. Since May we've logged over 128 hours of therapy. One consolation is that this is a huge jump forward in time spent on therapy with Abby, compared to before discovering ABR.
There have been some changes in Abby that are encouraging.

So off we go for another adventure. Grandma and Papa are coming along with us this time, so we should have lots of fun!!