Dress your child(ren) up in their favorite tutus, pettiskirts, faux tie t-shirts, or shirts and ties and come on out for an amazing event to support the March of Dimes!
Event Participation Includes:
Children's Hairstyle, Mini-Manicure, Makeup, Mini-Photo Shoot, 8x10 Photo & One Raffle Ticket
Shop These Amazing Vendors:
Awaking Your Soul
Bella Vita Originals
Close to My Heart Scrapbooking & Stamping
Dove Chocolate Discoveries
Frills ~ Pretty. Fancy. Fun.
Gigi Hill Bags
Lainey's Pawtique & Bakery
Miche Bags by Ruth
Rosemary's Designs that Shine
Stacy Rae Creations
The Gourmet Cupboard
Thirty One Gifts
Tutus & Headbands
Books & Puzzles for Babies: Donate your new or gently used children's books and puzzles to be sold for 100% donation to the March of Dimes! For every 5 items donated you will receive a raffle ticket!
To reserve your child's appointment or for vendor table information please contact Deanna Gile at 815-861-2278 or email@example.com (Vendor space is still available for the Janesville event!)
Event Participant Fee:
$50.00 donation for the first child
$10.00 donation for each additional sibling
Non-Event Participant Fee:
Only a $2.00 donation at the door - includes a raffle ticket!
One day all babies will be born healthy...
Sunday, March 20, 2011
Wednesday, February 9, 2011
Thursday, July 8, 2010
Friday, June 4, 2010
Closing Comments of my last update:
Our fifth wedding anniversary is coming up at the end of the month. Wow how time flies! In December we will have been together 11 years!! It is amazing how our lives have changed, our goals have evolved and our passion has become our daughter and being the best parents we can be, all while still being so in love with each other. Our needs and wants have changed too, we don’t care as much about having a big house and lots of stuff or going on fancy trips to Vegas – although I still love my Coach and Vera bags! :o) Our time is planned around being with Addison as much as possible and helping her to experience new things. We very much enjoy planning for the March for Babies and we hope to once day have a non-profit of our own. I am writing two books and hope to be published in the future and eventually write a children’s book too. I have a business idea that I really think will eventually take off and our ultimate goal is to be able to sell the house in the next few years and move to a smaller apartment near a special needs school where I can stay at home full time with Addy, explore my business idea and write my books during nap times and probably work part time in a pharmacy close to home or find a part time work from home opportunity. We are planning our annual garage sale for sometime in August and looking forward to more summertime fun with each other and our girl!
The reason I re-post this update is because of it’s irony! I can’t believe that it has been so long since our last post, since I last posted there has been so many changes in our lives, welcome to the latest update on the Gile Family:
Greta and I have a new addiction… FARMVILLE! For those of you on facebook, you know how easy it is to get addicted to the games on there! It is really a very silly game but we love it! In the beginning of August we took Addy to the Henry Villas Zoo in Madison. It was her very first trip to the zoo, we had a fun time!
Addy and I attended the March of Dimes thank you breakfast with Uncle Kevin and Auntie Shelly to accept The Addy Mac Pack’s PLATINUM award for the second year in a row! (Thank you to all of you who helped us make it possible!) It was a fantastic morning and then we strolled around downtown for a couple hours. Later that afternoon I had a meeting with Courtney from the March of Dimes to talk about some ideas I had for the upcoming year. She asked me to be a part of the family team committee for the 2010 walk, of course I accepted!
We hosted a playdate at our house with Addy’s friends Benny and Emily! It was a lot of fun to visit and watch the kiddos play.
Also in August, Addy started to inchworm! Inchworming is a version of crawling but since she can not hold her head up she basically scoots across the floor but putting her keester up in the air and then flattening out and doing that over and over again! She still needs some help inching but she is doing it! She is such a darn cutie!
I found out that our neighbor nominated me for the Unsung Hero award. It was such an honor that she nominated me. I was selected at the Advocate Good Shepard Hospital and Y103.9 July Unsung Hero, by a landslide! In November Courtney from the March of Dimes, my mom and I all attended a banquet dinner at Good Shepard Hospital to accept my award and the $500 donation for the March of Dimes! It was such a fantastic event with many individuals that really are heros in what their passion is!
I turned *31* and had a fun little party at Color Me Mine followed by a tapas dinner catered by the famous Nan Gile, it was delicious!
In August I received news that my position with MetLife would be eliminated. It was definitely bitter sweet.
We took a weekend trip in our own lovely city of Chicago with our friends Matthew and Kevin. We had fun shopping, eating (FOGO!) and taking a double decker bus tour of the city. It was a blast!
In early September Greta, Addy and I visited Conyers Learning Academy. We requested a meeting since we wanted to ensure that we were going to plan to move to an area with a great school for Addison. We absolutely loved the school and are excited to send Addison there when she turns three!
In September Addison started to have trouble breathing and sleeping, it got worse very quickly so we took her to visit the ENT. He scheduled surgery right away (9/21) because she her adenoids were causing an obstruction in her breathing resulting in the need for oxygen during the day and increased oxygen at night. She had her tonsils and adenoids removed on the 21st and has been much better since. When we went in for her 6 week follow up visit Dr. Schroeder was very happy with the outcome, he said she was a completely different baby than when he saw her initially! She will have a sleep study in the future to ensure that there are no other challenges with her breathing overnight. Until then she will remain on the night time oxygen.
I hosted a little scrapbooking gathering at my house in late September which was much fun!
My last day at Met was September 30th. Since then, I’ve been keeping busy taking care of Addison and volunteering for the March of Dimes.
In early October, we took a trip to the apple orchard and went apple picking with Auntie Shelly and Granny Nan. It was my first time and an awful lot of fun! I think I liked eating the cider donuts the best!
The most exciting news of October was that Addison finally got her new wheelchair! It is awesome! She absolutely loves it! She doesn’t even mind sitting in it because she can finally see everything!
As a result of my job elimination, we decided to move up our downsizing effort rather quickly. We moved to a two bedroom apartment in Palatine at the end of October. It is really nice to have Greta closer to work and also be closer to Children’s. We absoultely love our new place and have settled in quite well. So packing, unpacking, cleaning etc. have also kept me pretty busy.
Addy got her first Synagis shot of the season on the 30th and she weighed in at 22.5 pounds! She is getting so BIG!
Addy visited her pulmonologist, Dr. Lestrud and he is happy with her progress. He indicated that he does hear some occasional wheezing when she breathes which is typical of kids with BPD. So we officially have another diagnosis, BPD (Bronchopulmonary Dysplasia). Dr. Lestrud explained that Chronic Lung Disease is pretty vague and BPD better defines Addison’s condition. Here is a little excerpt copied from a kids health website that will help you understand what this diagnosis means.
Babies who are born prematurely or who experience respiratory problems shortly after birth are at risk for bronchopulmonary dysplasia (BPD), sometimes called chronic lung disease. A child is not born with BPD. It is something that develops as a consequence of prematurity and progressive lung inflammation.
Bronchopulmonary dysplasia involves abnormal development of lung tissue. It is characterized by inflammation and scarring in the lungs. It develops most often in premature babies, who are born with underdeveloped lungs.
"Broncho" refers to the airways (the bronchial tubes) through which the oxygen we breathe travels into the lungs. "Pulmonary" refers to the lungs' tiny air sacs (alveoli), where oxygen and carbon dioxide are exchanged. "Dysplasia" means abnormal changes in the structure or organization of a group of cells. The cell changes in BPD take place in the smaller airways and lung alveoli, making breathing difficult and causing problems with lung function.
Since we’ve moved, Addison’s Early Intervention Services transitioned to Arlington Heights. It has been bitter sweet because she really loved her old therapists out in McHenry County but sweet because out here Aquatic Therapy is covered by the EI program so we will no longer have to pay for that out of pocket. One of her therapists said that sometimes it is nice to transition to another therapist for services because they are a fresh set of eyes, she said often times that is a good thing for a child’s development. So far Addison has started OT, PT, DT & SLP. We have to take her to the clinic for OT right now because they do not have any home visits available. Addison’s physical development is progressing quite nicely. She has definitely gotten stronger and certainly is getting much bigger! She still struggles to hold her head up on her own but is doing much better and keeping it up longer than she had in the past. She definitely wants to get moving, she keeps doing this “sit-up” type motion and working her abdomen muscles.
It’s so hard to believe that Addy turned 2 years old on November 9th. We had a cupcake party, Elmo style, the weekend before her birthday. It was a blast! We had literally hundreds of cupcakes and many of our family and friends dropped by to visit. Since Addison has so many toys and clothes already we decided to suggest bringing a donation for Children’s Memorial NICU instead of a gift for Addy. It was so amazing to see the generosity of everyone, Addison got many blankets, onesies and outfits to donate to the NICU babies. She also got several micro-preemie gowns and hats, a couple micro-preemie bereavement gowns, some books, a mobile and a sound machine. We are so excited to bring the donations to the hospital and had planned to do that on her actual birthday, however, due to H1N1 the hospital has very strict visiting guidelines so we decided it was best to wait until Spring. As of now we are tentatively thinking about going on May 22nd which is the day Addison came home from the hospital.
On Addy’s actual birthday we decided to take her to get professional pictures done, they turned out very cute! In fact, the photographer convinced me to get in a couple pictures since I was wearing the same color shirt! You all know how I LOVE to match my girl!
ZING ZANG ZOOM! We went to the Ringling Brothers Circus the day before Addy’s birthday. Addy loved it so much that she slept through the entire first half of it! It actually was not as good as previous years but still a lot of fun! This will be an annual tradition around Addy’s birthday for years to come!
Addy got her very first haircut this month, I have to admit I was quite nervous! She did so well and looked so adorable with her fresh new look!
Addy is quite the artist, she enjoys painting and decorating cookies. We took her to visit with Santa at the cute little house outside LaStrada restaurant in Crystal Lake.
This Christmas we decided not to exchange gifts and instead do something for someone else. Greta and I bought several pairs of pajamas in memory of an angel named Sarah.
We had Christmas Eve at our house... Addy decorated cookies, Nan cooked and we all spent the evening visiting together. Christmas was in Janesville and Addy enjoyed spending the day with Grandma and Grandpa and got some fun toys!
I honestly don't remember what we did in January. Hmmmm, darn memory.
Greta bought me a new camera (Nikon D5000) for Valentine's Day! I spent a lot of time reading and learning about the camera and how to take great photos. My very first photo shoot was with my little girl - she was an amazing model and the pictures turned out fabulous! Addy decorated Valentine's Day cookies for her grandparents, Aunties, therapists and her friends at swim. She just loves to decorate cookies and especially loves to eat the frosting too!
We celebrated Uncle Kevin's birthday at a bowling party... it was Addy's very first time bowling and she loved it so much!
We took our very first trip to Disney World this month! On our drive down we stopped in Atlanta to visit Addy's favorite cousins, Alex and Katie. As usual, it was a lot of fun spending time with the kids, Andrea and Matt. We wish we lived closer so we could visit more often.
Addy very much enjoyed Disney! Auntie Shelly & Auntie Cordy vacationed with us and we all had a blast! Addy was "chronically happy" and enjoyed all of the rides, especially Pirates of the Caribbean, Winnie the Pooh, and the Buzz Lightyear rides. My favorite, of course, was It's a Small World - Addy did not agree. LOL! Addy met so many of the characters and got their autographs in her custom autograph book made by Mama! She even got a kiss on the cheek from Princess Belle. Her favorite by far was Pinocchio and he certainly LOVED her! It was the cutest thing to see him interact with her, he did not want her to leave! He held her hand and skipped next to her wheelchair while we walked away!
On our last day we met up with Karyn, Nick, Nicholas, Finley and Quinn! It was so great to see Karyn again and meet the two newest kiddos. We just sat in the hotel restaurant and chatted it up for hours!
We also celebrated Greta's *31st* birthday this month with our friends Matthew and Kevin. We painted pottery and went to dinner.
In April we were excited to finally be out and about since RSV season finally calmed down. We took a trip to Brookfield Zoo with Uncle Matthew and Kevin. We also spent an afternoon at a local park and played on the swings and slide and chilled out on the bench looking at the clouds.
This month I spent a lot of time working on March of Dimes fundraising. Granny hosted the "No More Blues, Baby" blues festival in Janesville - it was a huge success and a lot of fun! We marched in our 3rd annual March for Babies at the Chicago lakefront, unfortunately, it was cold and rainy so Addy only made a short appearance and I was not able to capture any pictures of the event.
We marched in our 2nd March for Babies in Janesville, Wisconsin. It was a beautiful day and a lot of fun! During the same weekend we visited Rotary Gardens to see Riley's brick by the fountain - it was perfect, simply perfect. I spent a lot of time taking photos in an effort to sharpen my skills with my awesome camera.
I had a fun photo shoot with my girl early in the month - she really is a ham! We also visited Navy Pier and the Children's Museum. We were highly diappointed with the Children's Museum because of the lack of accessibility for children with disabilities and those in wheelchairs. However, the Passport to India event was very cool - we experiences Indian cusine, dancing, and henna tattoos. I also captured some amazing photographs of the dancers! We finished up our outing with a walk around Navy Pier.
We took Addy to Make a Messterpiece in Glenview and it was a blast! She made several messterpieces and had a great time getting all full of paint! She loved it so much we bought her the summer membership so she can go whenever she wants!
We are excited to report that we just bought an accessible mini-van for Addy. It is really great for her and she loves being a big girl riding in her wheelchair instead of her baby seat.
Our first trip with the new MV was to Madison, Wisconsin with Matthew and Kevin. We swam, ate, visited the Farmer's Market, shopped, ate and sweated our behinds off! It was a warm weekend but a lot of fun. Again, I got to photograph everything and anything!
The Birth of Addison and Riley
That weekend I experienced some spotting, knowing that was one of the warning signs to watch for we called the doctor right away. She advised to go to the emergency room and let them know that labor and delivery was expecting me. We were frantic, we rushed to the hospital and I had a full work up, including checking to see if I was dilated. Everything checked out fine, no contractions, I was not dilated, so they sent me on my way.
I went to my OB/GYN on Tuesday, as a follow up to my weekend visit at the hospital. She explained that everything appeared fine. I sat there wondering if I would have an internal exam, I kept wondering if I should insist on one. I decided that she would have done the exam if she thought there was any cause for concern and went on my way. I knew I would see my Perinatologist in two short days so I was not overly worried.
At 24 weeks and 5 days I sat in the waiting room of the doctor’s office and was completely prepared to spend the next 16 weeks in bed at home. I remember it was prematurity awareness month and there was a poster with a tiny little baby from the March of Dimes hanging by the check in window. As I sat there patiently waiting I looked at that poster and thought “that will never happen to me.” I completely dismissed it. Little did I know that our babies had other plans.
The ultrasound technician came into the room and by this time I had dozens of ultrasounds so I knew the routine and knew what to expect on the television screen above me. As soon as the first image appeared I knew there was something wrong, the technician immediately ended the scan and indicated that she would be right back. Dr. Duvall accompanied by a nurse walked in and immediately asked where Greta was, it was the only appointment she wasn’t at because work was very busy. He was very solemn and explained that there was a problem, I was already 3cm dilated and my waterbag was protruding, I would have to be admitted to the hospital immediately and put on strict bed rest. Then he went on to explain what might happen if the babies were born today. “Today? That’s not possible, they’re not ready yet!” I demanded. He went on to explain some details of which I really can’t remember, I am quite sure I was in shock. The nurse escorted me to her office where I was left alone for what seemed like an eternity. I sat at her desk, cluttered by assorted post-it notes and zillions of pictures of her happy, healthy grandchildren, and started to make calls on my dying cell phone and write a list of stuff I would need for the next several weeks. I called Greta at work and on her cell and she wasn’t answering, I was in hysterics. I ended up calling one of my team members and insisted that he leave his desk and find Greta IMMEDIATELY, he knew something was really wrong. While I waited for Greta to call back I called my sister at work and explained that she needed to come to the hospital right away. I know Greta called back, I do not quite remember how the conversation went, but she made it to the hospital in very little time, if fact she made it at the same time as my sister who was only a couple miles away, I am sure she had to have been driving well over 100mph, thank goodness rush hour traffic had not yet started.
I was greeted by a wheelchair and escorted to labor and delivery where I was promptly put in an inclined bed with my head practically on the floor and my feet as high in the air as they could go. I was given an assortment of medications, magnesium in an attempt to stop labor and the steroid shots began immediately to mature the babies lungs for early delivery. The plan was to stabilize me and then transfer me to Loyola for the remainder of my pregnancy. I just couldn’t imagine being in bed for that long in a hospital that far away from home. Unfortunately, that worry would soon be the least of all my future worries and fears. During the evening, Greta and I were visited by the head Neonatologist at Sherman, who was a short, stocky, unusual woman with no bedside manner who explained what the potential outcome would be if the babies were born this early, she left little to our imagination by sharing the unpleasant truths of premature birth.
The babies were barely viable and it was likely they would not make it, especially Riley who the doctor prepared us from early on that he would likely not make it. I was expected to miscarry him and go on to have a ‘normal’ pregnancy with Addison. Riley suffered from low amniotic fluid and we later found out he also suffered from chronic placental abruption, which is what caused the preterm labor. As Riley continued to fight, grow and thrive week after week the doctor emphasized that he would likely not make it, even if born full term, because his lungs would not mature enough due to the low fluid.
I was monitored very closely as they waited for the inevitable. I kept complaining of pressure in my abdomen but the nurse kept reassuring me that the monitor indicated that I was not having contractions. When the overnight nurse started her shift I told her the same thing, I was certain there was a pressure in my abdomen and I also explained that my back was in seriously severe pain from what I assumed was laying in bed. Greta went home to get some rest and intended on trying to work from home the next morning and coming to the hospital in the afternoon. After some more insistence the overnight nurse moved the monitor to a different place on my belly and it immediately read that I was indeed having contractions. There would be no time to stabilize me, there would be no transfer to another hospital, what would be is two tiny little babies born in the very near future. I called Greta to come back to the hospital and told her I was in labor, she rushed back. They paged Dr. Pamoran and he came in to perform an ultrasound which confirmed that Addison’s head was crowning already. They were still able to hold off my delivery a little more. Very early in the morning Dr. Rachel came in and explained that we would have to deliver the babies. She wanted to deliver them in the morning as opposed to waiting until later in the day because staffing would be better. I was given one last dose of steroids and prepared for labor.
At 10:07 am I pushed Addison into the world and just one short minute later Riley was quickly pulled by his legs from my body. I couldn’t see the babies, they were surrounded by medical staff who were fighting to save their lives. Greta asked if Riley was a boy or a girl and they exclaimed “it’s a boy!” and we were so excited. All along we thought he was going to be a girl but it was too difficult to tell in any ultrasounds with certainty because his legs were crossed and he was so tightly snuggled in his space. The babies were successfully intubated and breathing with the help of a ventilator. They were both given doses of Surfactant to help them breathe. The Addison team actually did the “pink dance” when she started to pink up a little! Soon the babies were wheeled out of the delivery room in their isolettes to the NICU. As they passed us, we couldn’t help but notice how incredibly tiny they were. Addison was 1 pound 9 ounces and 13 inches long and Riley was 1 pound 7 ounces and 11 inches long. They weighed the same as about six sticks of butter!
After recovering in the holding area they wheeled my bed back to my room. Greta and I started to make calls to tell everyone the news. I remember that I was oblivious, I was convinced everything was okay and that even though they were little they would be just fine. The nurse indicated that the babies were with the medical team from Children’s Memorial Hospital and that they would be brought to our room so we could see them before they were transported over 50 miles away. They later decided that we should come to the NICU to see them before they were transported. I was elated as Greta pushed my wheelchair down the hall to the NICU. When we got next to Riley’s bed the kindest transport nurse asked me if I wanted to hold him, I was amazed that we would be able to hold them so soon. It wasn’t until she asked me if I wanted to hold him with or without the breathing tube, that I had any idea what was going on. I immediately freaked out and said “but if you take the breathing tube off, won’t he die!?” and she sweetly replied “yes, he’s here to do that with you” as she handed him to me without the breathing tube. Greta and I held Riley as he took his very last breath and passed away in our arms. He was so tiny, so pale, so fragile, and so precious. I felt very betrayed that the medical staff lied to us and did not tell us how sick Riley was.
After letting Riley go, it was time to see Addison. I immediately needed to alter my emotions and be happy and think positively for my little girl. I literally felt sick to my stomach as I stood up from the wheelchair and made it known that I felt like I was going to vomit. How could I possible alter my feeling when I just lost my son? Somehow I managed to keep from vomiting and found tremendous positivity from the very pit of my being. We walked the few steps to Addison’s bed. There were no offers to hold her, she was so tiny and so fragile and had tubes and wires coming from her miniature body, but she was pink and to me she actually looked pretty good. I smiled at the transport respiratory therapist and she told me I could touch her. I put my finger in her tiny hand. It was at that moment that I was confident that everything would be okay.
We went back to the room and the nurse brought Riley in for us to spend some time with him and say our goodbyes. Greta and I sat in my bed and held Riley and cried. We looked at his little body and soon had the realization that he was just too sick. His development was much further behind than Addison’s due to the lack of nutrition he received from the placental abruption. He did have the cutest little club foot, just as Dr. Duvall had said he would. He had the most perfect little lips and tongue. He was our son and the most perfect son that anyone could ask for and no one could ever take that away from us. We took the little knitted blue hat off his head and decided that we would keep it for ourselves.
My sisters were there to share those final moments with us. Shelly was by my side as Annie held Riley and Greta sat close to them. I don’t know what they were saying but I remember looking at them and thinking how lucky I was to have such amazing people in my life. Shelly was not able to hold Riley, this effected her in such a painful way and it was just too difficult for her.
After we said our final goodbyes, Greta called the nurse in to take Riley. Just before she came in we stole the hospital blanket that he was wrapped in.
The transport team was ready to take Addison on her 50 mile journey to the city. They stopped by my room so we could see her one last time before she left. She was in this incubator type contraption that looked like something from outer space. We said our I love yous and they headed out.
Soon after, I was transferred to the postpartum and recovery unit. As we were lead through the hallways they played the “new baby” music twice, only I did not have any new babies accompanying me. It was devastating being on the new unit, hearing all the babies crying and I was in my room with no babies at all, while being ignored by the nursing staff and treated like an inconvenience when they were there, simply because I did not have a baby there with me. It’s interesting how quickly your plans change and instincts take over. I had prepared a birth plan just days before and all of the instructions documented in the plan were out the window. Greta was with me, Addison was all alone at another hospital far away and Riley was in heaven.
Saturday, July 18, 2009
For the past couple months Addy’s reflux has had it’s ups and downs. Overall we’ve seen improvements after changing around her formula and medications, however, we think that she may have allergies that are contributing to her reflux. (Her latest formula is Elecare which is hypoallergenic and essentially the most basic formula they make.) Lately she’s also been waking up in the middle of the night with reflux, which is something that she hadn’t done in the past – and if you know Addy, you know that she LOVES her sleep. So, when she is up in the middle of the night she is not a happy camper.
Thursday we had a long awaited visit with Dr. Bass, her GI doctor. He was actually happy with her progress as she’s gained almost one whole pound since he last saw her two months ago. (She’s 18.5 pounds now!) He said her coloring looks better too. He said that unfortunately she will continue to have reflux and vomiting until she gains more weight, with weight will come more muscle and as she develops abdomen muscles her reflux should start to decrease. He’s suggested we try to increase her feeds overnight by 50 cc which will bring her closer to 75% of the total caloric intake that is ideal for her weight. He confirmed that allergy symptoms have been really bad recently and suggested a couple prescription allergy medications but we will need to wait to see the allergist in September to get her thoughts. We tried to see if he could pull some strings to get us in earlier but sadly, no. We are so excited that the possibility of a GJ-Tube was not even mentioned at this time!
We also had our annual Early Intervention (EI IFSP) review, we last met with her team about 6 months ago. Her case manager, speech/language therapist, occupational therapist, physical therapist and developmental therapist met with Mommy, Mama, Auntie Shelly and Granny Nan. We were very excited with the reports we received at her review!
Her physical therapy assessment was reported by her therapist, as improvements have been made, but her overall scores will appear low as a result of her inability to hold her head up and her lacking trunk strength. She told us not to focus on those results because she has made improvements, they just won’t be measured on that scale. She was pleased that her motivation has increased in the past 6 months. She did comment that she believes that her strengths lie in other areas. Some comments her therapist made are “challenges…with decreased strength and muscle tone through her head/neck, trunk and extremities… endurance with head control is significantly decreased, which impacts her ability to develop more age appropriate gross motor skills.” More positively, “…continues to demonstrate increasing social skills… trying to lift her head more frequently… smiles even more… generally less irritable during therapy sessions… somewhat more motivated to be upright and a part of what is going on in the room.”
On a side note, we’ve started Addison in aquatic therapy. While at the hotel for the March for Babies we went swimming and noticed that she held her head up in the water for a longer period of time – we were so excited that we immediately started to research water therapy. We found a fantastic therapist at Centegra Healthbridge and she sees Addy in the water twice a week. Since Addy loves the water so much this is a more ‘exciting’ therapy for her because it is something she enjoys. I (Mama) go with her to all her sessions and have seen dramatic improvements since we began. Her therapist is very pleased with her progress and often makes very positive comments about her abilities. She will be reassessed on land in the middle of August so we are excited to see those results. The goal of aquatic therapy is to get her moving in an environment that she enjoys so that the skills will transfer onto land. We are hoping to see improvements in her EI (land) physical therapy as a result of these additional efforts.
Addy’s therapist for occupational therapy shared with us an event that took place in her therapy earlier that day – she indicated that Addy scooted on her belly using her legs and feet (with her head and trunk on the floor) across the ground, with a rolled up yoga mat behind her feet for leverage, towards a set of toys. She apparently bumped softly into one of the toys with her head and started crying, not because she was hurt, but because she was stopped from her mission. They moved the toy and behind it was her very favorite toy, a pink and white bird house, she continued scooting to that toy and began to play with it immediately. Her therapist was so excited in her motivation and ability to move towards the toy. She did say that she can’t understand why Addy loves this darn toy – she has SO many others and she only seems to like playing with this one. We shared that she had a sound machine in the hospital that played birdies tweeting for six months. You could see the immediate understanding in the entire group of therapists at the table. Such exciting stuff!!!
In her actual review for occupational therapy her therapist is very happy with her increased motivation. She is also thrilled with her new Wombat chair and the abilities that Addy demonstrates while in her chair with her Benik vest on for additional support. Some of her comments are… “has improved in the area of fine motor skills… demonstrating hands to mouth and hands to midline… will hold a crayon once positioned and briefly scribble on paper; she placed three blocks in a shallow bowl (this is a higher developmental level than above standardized score). She was able to pop out spring-loaded pegs from a base.”
Overall her speech assessment was the most exciting review as she placed age appropriate in one category, yes folks REAL AGE APPROPRIATE!!!!
Her speech therapist was incredibly excited about her progress and shared that with us. I immediately started crying hearing about her accomplishments from her perspective in this area. She is really doing very well in speech and quite a smart little girl given the amount of brain damage she incurred as an infant.
Addy’s language comprehension is most solid at 9-12 months with some scattered to 21 months! Her language expression is scattered at 6-9 months. Her feeding skills are noted atypical due to her G-Tube. Some of the comments from her speech therapist were… “…responds to music, attends to pictures, responds to sounds when they are not visible and reacts when her name is called… was able to look for familiar objects that were not in sight, visually scanned and looked directly at several named objects (15-18 month skill). In addition she was able to look at named objects from a group of five (jelly fish toy, book, spoon, [Auntie’s] hat, ziggy pasta) and looked at pictures when named (choice of two) in an unfamiliar book (18-21 month skills).”
Her language expression skills are at or emerging at the 6-9 month age level. She coos, makes vowel sounds, babbles and can make occasional consonant sounds. She has made gains in this area. We’ve introduced signing but her motor skills make it difficult for her to sign. She can sign ‘more’ using more of a clap motion with her arms extended. Feeding skills are of significant emphasis in speech therapy for Addison. She has made good gains in this area and enjoys eating new tastes. She especially likes ice cream and other sweets! Addison smiles often and interacts with her smile and eyes.
Addy sees a developmental therapist once a month, she observes her abilities and gives suggestions on various other ways to achieve each of her therapy goals. Developmental therapy has focused on motivation, play, interaction and exploration activities. This therapy focuses a lot on different ways to play and gain from the play. Her therapist was extremely impressed in the improvements she’s seen in Addy. She also commented on her increased motivation. She was very excited that we’ve taken the initiative to enroll her in various other activities. She believes the aquatic therapy will be a success and she is happy with her attending the Little Gym. She said that all opportunities to be in another environment and/or around other children are all very positive.
At the time of her developmental assessment Addison had just received her Wombat chair and recently started aquatic therapy, when I re-read the assessment it is clear the improvements she’s made in a short time. Some of her therapists comments are… “Motivation has increased and is noteworthy throughout the day… interested in a variety of toys and shows favorites… moving in floor time by wiggling, reciprocal kicking and starting to roll to her side…her overall development continues to be dependant upon mobility, head control, motor planning skills and strength… uses eye gazes and facial expressions to interact with others… smiles in response to adult attention… seeking out attention…beginning to show affection or favorites, likes/dislikes and preferences.”
There were several suggestions made in the meeting, such as getting on the list for an assessment at Easter Seals, potentially visiting a developmental toy lending library, taking pictures of Addy’s favorites and putting them in a book for her, possibly getting a stander (a stander is a sort of standing wheelchair that she can move around on her own in a standing position), and trying to find a device to assist with keeping her head up during eating and while in her car seat. They also encouraged us to continue with the aquatic therapy and Little Gym. The next day I remembered that we wanted to look into a shower/bath chair for Addy so I emailed our case manager and am awaiting her reply. Overall, continue doing what we’ve been doing and more!
Also, based on the success Addison is seeing in her Wombat chair we are exploring getting her a pediatric wheelchair. Right now it is a challenge to find an in network provider (and wheelchairs are not covered through the Early Intervention program) so we are probably going to have to try and get an exception to go with an out of network company. Below is a picture of the chair and some information from the website – it will really be great for her compared to her stroller which really requires the rider to have trunk and head support.
- Adjustable front and rear-facing seat lets the child face the caregiver or interact fully with the environment
- Rugged tires prevent flats and missed appointments or school days while waiting for repair
- WC-19 Crash test compliant and bus-transportable
- Comes standard with black storage basket under seat
- Winner of the Red Dot award for Design Excellence
Therapists can easily adjust the seating systems to optimally support and position a child as he or she grows and develops. Extensive support pad systems and numerous positioning accessories allow for the seat to be adjusted and positioned to meet each childs' needs. Shock-absorbing springs on the frame reduce the likelihood of tone fluctuations and the frame absorbs any jarring that could compromise the child's position. The frame is easily folded with the seating system to allow for quick and easy transport of the frame into a vehicle. The Kimba is WC-19 certified and is bus transportable. It's sleek design, caregiver friendly options and quality engineered components make it a favorite among families, caregivers and therapists alike.
Best for those children unable to self-propel. Primary mobility device for a child requiring additional upper body support and mild seat contouring.
Monday, June 29, 2009
Hi there! Addison is doing well despite her reflux. We think she may have allergies that are aggravating her reflux even worse. We started her on some Benadryl so hopefully we will start to see some improvement. We see her GI doctor again in July so we will keep you posted. She has gained a tiny bit of weight, she is 18 pounds! Hope to keep packing some weight on her! We've been doing some fun things here and there this summer.
Also, wanted to share that I have been writing a book. It is a memoir of Addison's journey. I hope to have it finished by the end of the year. I am also "writing" another book, a compilation of stories from families that had a baby in the NICU.
If you are a NICU parent, former preemie, NICU graduate and are interested in writing a short story to be included in the book, please let me know. My hope is that it will get published so Greta and I can use the money to start a non-profit organization to help other families. Even if it didn't get to publishing I will be having it bound and shared with NICUs for their family waiting rooms.
Journey of Love and Hope
A compilation of inspiring stories from NICU families.
I would be looking for a 1-3 (8.5x11) page, double spaced short story about your journey.... can be anything you want to make it. If you want to talk about a particular day or the whole stay or if you want to just give a tiny bit of history of the NICU and focus on the present. I would like all types of stories to inspire parents and to help those that also need to heal from a loss. If you do write a piece can you please include two pictures, one of your baby in the NICU and one of your child today? Each story will simply be titled the baby's first name.
I am also thinking about sprinkling some stories from NICU nurses, neonatologists, RTs, surgeons etc. about their journey as a life saving professional. If any of you are interested please send me your story! It can be general or about a specific baby/family or just about you - whatever you want to make it. If it is about a specific family you will need to get their permission to publish a story about them. If you know other NICU parents or families that might be interested please share this with them. All stories and pictures can be emailed to me at... firstname.lastname@example.org.
Hope everyone is enjoying the summer!
Tuesday, June 2, 2009
Here are some more Mother's Day pictures!
Alex and Katie both enjoyed pushing Addy in her stroller!