Chance has a large network of supporters and people praying for him. We can never thank everyone enough for all of the prayers and love that we have received over the past months and especially since Chance was born. Thanks to everyone...I hope you come back regularly and watch Chance as he grows!!! (He told me just the other day that he can't wait to WOW all the doctors and show them all he can accomplish!!!)
The holiday season is almost over and with the season drawing to the end, comes an opportunity to look back at the past year and think about how wonderful the past year has been for our family.
The holidays were very enjoyable for us this year. Chance started to “get” some of it. He knew we were celebrating an important birthday. I don’t think he gets the total picture of all of that yet but I am happy that it was about a little more than just presents. His advent calendar allowed us to build a nativity scene and we talked about it each day. He really enjoyed the new books that I got this year about the animals in the manger.
We got the opportunity to do a few special Holiday activities. We went with Amy and Brett to NC Museum of Life and Science to Santa Train. Chance loves Brett. He doesn’t understand exactly how to express that yet but he gets very excited when we talk about Brett and when we see pictures of him. This was Chance’s first encounter with Santa Claus this year. He wasn’t too crazy about Santa but Mrs Claus…he wanted to talk to. J
Then, we went to New Hill, NC on one very cold Saturday morning for a ride on a REAL locomotive Santa Train. Papa and Nana went with us and we chose wisely. Santa started out in our train when we left the station. Chance wasn’t apprehensive at all about Santa. He sat in the seat and really inspected Santa when he sat down in the seat. The train ride was about an hour round trip. It was very fun and scenic. At the end of the ride, there was someone dressed like Frosty the Snowman. Well, Chance has a little bit of an obsession with brooms lately. Chance went up next to Frosty and yes, he tried to take Frosty’s broom. It was the cutest thing ever.
I got to do some of the things that I have always dreamed of doing with a child this year. We made Christmas Cookies and decorated them for Santa. I got a plate made especially for Chance’s cookies for Santa. Seeing the joy on Chance’s face when he saw our Christmas tree with all of the lights and smiling every time he told me to turn the tree on each morning.
The holiday gatherings on Christmas Eve and Christmas Day were all fun but still overwhelming for Chance. By the end of Christmas night, Chance was so tired that he was just an angry little toddler. We were suppose to see my step-mom’s family on Monday, Dec 26th, however …Chance woke up with some kind of strange thing going on…no fever but vomiting and he just laid on the couch or the floor most of the day. I wasn’t sure what was wrong and was actually very scared because throwing up with no fever can be a sign of shunt issues. Tuesday, I became convinced that it was a virus when the same symptoms were passed on to me.
Developmentally, Chance has started to make some real improvements. He has started to have a longer attention span when we are playing together and even his therapist are beginning to see the changes and reassured me that we are on the cusp of seeing some big changes.
I feel like we are so blessed. Chance has come through so many obstacles that it is unbelievable when one really stops and thinks about it all. The odds were stacked against him and he has met every challenge and accomplished them in his own time. Learning the lesson that we are all unique and we are all on our timeline has been a great lesson.
Chance has a big clinic appointment at Duke and will be undergoing some intense testing on his kidney/bladder functions in February/March 2012. Please continue to keep him in your prayers.
Life has been so busy that I had not even taken time to download pictures from my camera that I had taken since June 2011. It is amazing to see how much Chance has grown in just 5 months. WOW.
Chance has started gaining some height. His doctors were concerned that he was remaining well below the “growth charts” for his height …but he sprouted and yes…now can wear footie pj’s and they fit. J
We had a fun summer that we ended with another trip to Myrtle Beach with a stay at Dunes Village.
We had some medical evaluations throughout the summer and the doctor’s agree now that Chance has Sensory Processing Disorder. Basically this means that, Chance doesn’t process information he obtains from his senses (sight, smell, touch, etc.) in the same way that other people receive those signals. We are starting Occupational Therapy to help us understand and figure out how to help Chance on November 9th. Now that we understand the why behind some of his reactions (such as crying and melting down in groups of people for no obvious reason, shaking his head from left to right over and over, extreme pickiness with food, dumping out toys and not playing, very limited attention span, etc) If you want more information here is the website http://www.sinetwork.org/about-sensory-processing-disorder.html
Chance started attending SonShiner’s Preschool in September. He had a rough start and was really missing his mommy and wasn’t sure about being in the new environment. He adjusted after a few weeks and it was great to finally hear him want to go to school in the mornings. SonShiner’s Preschool gave Chance an opportunity that some of the other local preschools would not even consider. I am very grateful for them and the opportunity that they gave to Chance. Chance’s behavior from the disorder and needs, requires a lot of attention and the school is brand new so they have limited resources. So, we decided that it will probably be better if Chance does not attend until we can get some of the processing disorder things figured out and they are very open to having him be part of the school and class when they have an extra person or volunteer at the school to help. We are in the midst of working all of that out…so please say prayers that we (the school and myself) are directed in the best way to proceed.
We had the opportunity to attend Family Fun Night at Marbles Kids Museum in Raleigh on Oct 27th. It was a great experience for Chance. There were other families that we had met from the Spina Bifida Support group in attendance. Marbles has a family fun night every quarter for families of children with Special Needs. That was the first outing that we have had in quite some time where Chance didn’t have any meltdowns and honestly he acted like he was comfortable with his surroundings.
I finally found a new job. I was lucky to be employed at Nortel since they filed bankruptcy in Jan 2009. I survived seeing a great deal of sad change at that company. The new job that I found was at Cisco. They made a recent change in the landscape of their organization and decided to move a portion of their finance positions to RTP. I was lucky enough to be one of the first people that they hired. I started with the company on October 3rd. Since I was one of the only people in RTP, I had to do some traveling to receive training from counterparts on my team. I spent a week in San Jose, CA and 2 days in Lawrenceville, GA (about an hour outside of Atlanta). Jason, Papa, Nana, Grandma and Pa handled Chance with no problems while I was gone. I missed being home a lot but it was comforting to know that Chance was being taken care of by folks that love him.
Well…that is the update for now….Halloween is tomorrow…I am going to try to take Chance trick or treating to just a few homes for the first time. Then, it is Thanksgiving and Christmas time!!!
Wow…Chance has REALLY enjoyed the spring. We have spent at least some time outside everyday, which has been awesome. Life is so much different this year since he is using the walker. He and I can get out and walk around the yard or walk out to the nursery.
After very extensive testing at Duke, the doctors are not concerned about seizures. He had an eye exam and an endocrinology follow-up and both turned out fine. God continues to bless us.
Chance has come a long way in just a few weeks. In mid-January, we started letting his walker be “part of him” every where we went….he had his walker with him and it gave him A LOT of independence. Well, from there…in late March, he started walking just a few steps if we were sitting down and coaxing him to walk to us. Now, he prefers to walk holding just one of our hands and will come to us all the time and says walk, walk. He has even gotten brave enough…that yes…he let go of his walker and walked across our living room without any assistance at all. I am so amazed by the great things he is accomplishing….I go back so many times….to October 2, 2008 and sitting in that hospital conference room with three doctors telling us about spina bifida and about the bleak future. OMG….What would I have missed if I had listened to them? I have been blessed by god more since then than I could have ever expected…and I have the most wonderful son in the world. He makes me smile, laugh and cry and teaches me so much about life.
We are going tomorrow to look at the Early Intervention Preschool in Roxboro tomorrow. It is hard to believe that Chance is old enough to be thinking about Preschool and where he will eventually go to Kindergarten. Wow…how time flies.
I am looking forward to a wonderful summer and more exciting developments to report.
Chance had a WONDERFUL birthday. We had a family party for his birthday with his cousins and extended cousins in attendance. He had a Mickey Mouse Clubhouse theme and he loved it. His birthday and party was on Saturday, 02/26 and on Sunday…he went to our basement door and pointed and said party, momma? I had to explain...no, we don’t have a party everyday.
Chance had a visit to Spina Bifida Clinic at Duke on 2/24. Things went very well during that visit. The doctors were very pleased with his progression and think that things are on track. The urologist, Dr. Weiner, is a little concerned with some swelling in his kidneys that showed up on his ultrasound. We will be repeating the ultrasound again. Hopefully, that will show there is no reason to be concerned.
Recently, things have been going well. Chance’s vocabulary has really expanded. He is saying 2 and 3 words together now. He is finally saying a few things purposefully and telling us what he wants. Chance has also started to take a few steps when we are coaxing him. (I posted a short video) I am very hopeful that those steps will eventually turn into more and more independent steps.
Chance’s physical therapist has a suspicion that he possibly had a seizure during his session this week. I called the Pediatrician and she referred us to Dr. Gallentine, a pediatric neurologist. The appointment is Monday, 03/28…hopefully we will find out more at that appointment.
We have been taking advantage of the nicer weather that we had and letting Chance get outside and play. He loves the sliding board and riding on the Gator.
Wow! It has been a rough couple of weeks. Chance started acting really odd on January 20th and 21st. He was just more fussy than normal. I first thought maybe there was something going on with a tooth. By Saturday, he was running a fever and coughing. We went to the doctor on Monday morning, and he was diagnosed with Pneumonia and double Ear Infection. No wonder he was crabby!!! So, I stayed at home with him all week and worked as much as I could. Well, by Thursday afternoon…I was feeling awful…and on Friday, I was at the doctor getting my own antibiotics. Thankfully, today….both Chance and I seem to feel much better. FINALLY!!!
We have been trying to let Chance enjoy a few of the warmer days by getting outside and walking around!!! He loves it. He goes everywhere and has definitely discovered that mud is a great thing.
For a few weeks now, Chance has been randomly saying Monkey House. Well, I had no idea what he was talking about or where he could have possibly gotten an idea to put those two words together. This past Friday, I was working at home and I had a teleconference to join…so I turned on Mickey Mouse Clubhouse for Chance. I don’t often turn on the TV to babysit him but I had no choice at this particular time. When Mickey Mouse showed up on screen…Chance pointed and with a great big smile loudly announced MONKEY HOUSE. I had a DUH, Moment!!!
Chance is really enjoying the new found independence he has with his walker. His PT, Kara, told us to give him the additional independence on whereever we went that he used his walker to walk. He loves it. Mom is having a hard time adjusting but it is worth it to see him so happy. With the typical toddler, you can hold their hand while they are walking and that kinda keeps them on the same path with you…with Chance he is using his hand to steer the walker so you kinda have to just let him go…so anything off the path that he finds interesting…he goes over to it. So, if we are in the hospital halls, he wants to go in every door or if we are in a store and he wants something on a shelf...he goes for it. So, I have to learn how to deal with those situations.
We didn’t make it to Spina Bifida Clinic at Duke in January because Chance was sick and we didn’t want to share his germs with everyone. So, now he is scheduled for his big appointment on February 24th….just before his 2nd birthday!
Here we are, embarking on another year. New Year’s always give me a sense of excitement and anticipation. What is going to change this year? Since we now have a Chance in our lives that is even more relevant. Man, children change SOOO fast. It seems like just yesterday that I was pregnant and here he is almost 2 years old.
Chance has been doing really well the last couple of months. His vocabulary is growing (although, he STILL refuses to say mama). Chance is standing a lot more, which means he is getting in more and more trouble these days J
The holiday season was hectic as always. Chance recognized the tree this year and liked having it turned on. It is going to be kinda sad to take it down today. Chance was not really in to opening presents this year. He didn’t get as excited as I expected, but at least he liked the gifts and he got excited about playing with the toys.
Chance is still participating in Physical Therapy every other week and speech therapy every week in the New Year.
January brings around his 6 month Spina Bifida Clinic. I have some questions that I am hoping I can get resolved at clinic in January.
Happy New Year to everyone.
WOW! Time has flown and I haven’t updated this site in a while, sorry about that!!!
Let’s see…
In July 2010, Chance had a clinic appointment at Duke where he got really good reports. Things were great. He is on acceptable weight/height curves now and the doctors were very pleased with his developmental progress.
Chance had eye muscle surgery on August 2, 2010 to correct the strabismus in his right eye. He did well with the surgery, not a lot of complaining. He did not like the eye drops and ointments that had to be put in his eye for 2 weeks post surgery. We found out on September 3rd, that the surgery was successful. I was so happy.
The Physical Therapist that we have been working with at UNC decided that he was going to leave UNC for another opportunity. Just before he left, he helped us get a pediatric walker. Chance didn’t like it and was not interested in using it at all. I was told it would be one of those things that we would have to work at to get him interested in using it.
Labor Day weekend, brought yet another challenge. Chance just wasn’t acting like himself on Saturday. He was fussy and sleepy. Sunday…it seemed even worse. He just seemed to be overly tired. I took him to the pediatrician on Monday and Dr. Godwin couldn’t find anything on the surface that was wrong other than a little constipation. I was still unsettled and just didn’t feel right about what was going on with him. Tuesday, I had to go back to work… so when I went over at lunch to cath him. My dad told me that he had been sleeping all morning which is very strange. I looked at him and he just didn’t look right. His head looked weird and his eyes looked dazed. I called the Neurosurgeon when I got back to work. I spoke with the Physician Assistant, Peggy about 3pm and she said I should probably bring him to the emergency room just for a precaution. At this point, I was pretty sure that something was going on with Chance’s shunt. We got to the emergency room about 4:30pm and about 8pm, they told me yes, his shunt was malfunctioning and they were going to admit him to the hospital. On Wednesday about noon, Chance had his shunt replaced. The surgery went well. They replaced the entire track of the shunt…so he had the incision in his head and in his tummy. It was so amazing because by the time he got out of recovery and back to his room. He was already acting more like himself. It is so scary to me how a piece of equipment in his body basically controls him and allows him to be normal. Technology is great and scary at the same time. We got home on Thursday about 1pm.
Chance had a follow-up appointment on September 23rd, and everything looked fine. So, they scheduled his baseline CT scan for October 28th.
We had the opportunity to have Robin, who is a PT with the CDSA come out to our home on Sept 24th. This was such a wonderful opportunity. Robin showed me things that I could do in the home to help Chance, gave me recommendations on some things that we should change. I also mentioned to her that Chance would not use the pediatric walker..And she asks if I wanted her to try with him and I was more than happy about her willingness. Well, in 15 minutes…she has Chance up and walking with the walker. At first he cried while he was walking and was protesting doing it but he still pushed through and did it. After Robin left, he went and got his walker several times and walked with it. I was so proud and happy that yes, I cried!!! On Sunday, Sept 26th, we took Chance outside and he walked all around our yard. It was an entirely new experience outside for our whole family because for the first time Chance had a little independence outside.
On Monday, Sept 27th, Chance was acting odd again when I saw him at lunch. That afternoon, I picked him up and he was just sleeping up a storm. I thought ok…don’t panic…maybe he is just tired. I got home and took him out of the car seat and he felt very warm. So, when I changed his diaper…yes…he had a fever 103.5. Well…the panic ensued. I called my mother in law and after a little debating what to do and calling the pediatrician…off to the emergency room we went. Well, they couldn’t find anything wrong. So, about midnight, we came home. I woke up about 3 to check on him and he felt hot again. I checked his temperature and it was 105.6. I really did freak out. I wanted to call the ambulance but we called Susan again and she came over. We gave him some more Motrin and got his fever back down a bit. At 7am, we went to the pediatrician’s office. They tested everything under the sun and saw nothing. I called the neurosurgeon and they told me to give it 36 hours…if his fever was still spiking to bring him back to the emergency room. Thankfully, it went away on Wednesday morning. Still no answer to what was going on at that time.
Saturday, October 6th, my parents came to visit since he had been sick all week. He was all over the house playing and for the first time, he stood up behind one of the push toys and started walking with it. I was amazed. He hasn’t stopped with it since then. He still crawls some but for the most part if he can find his walker…he uses it. What progress he has made. It is so exciting.
We took Chance to the beach for the first time on October 15th. We were suppose to go in the middle of September but had to cancel our trip due to his shunt revision. The weather turned out to be nice at Myrtle Beach and Chance seemed to enjoy it. He loved the sand and loved the lazy river at the hotel.
Thank you all for the prayers when we have these trying times. I really feel everyone praying for us because I do get a sense of calm and comfort and knowing that Chance is in god’s hands and he is looking out for him.
The last few weeks have been busy and July is looking like a VERY busy month for Chance.
Chance started Aquatherapy at UNC Wellness Center. We are doing the Aquatherapy for a while instead of Physical Therapy at the UNC Children’s Hopsital. This will just give Chance’s muscles a different work out. Chance LOVED the water at the first session and he worked for almost the entire hour. He even had weights on his legs which made him work that much harder.
Chance also started speech and feeding therapy on Wednesday mornings. I can’t say that I am thrilled about that whole process. After a few weeks, I thought we had turned a corner and Chance was going to start eating small bites of non-pureed food...BUT…he proved me wrong. He goes through periods of time where he will eat small bites of something that he can hold and eat (chicken nugget, fish stick, sweet potato fries, etc) but other times he will have nothing at all to do with it. He has started to babble a little more. He says DADA and Bye (with the cutest wave ever) and he even has a name for me (LOL) MMMMBye (I have no idea where he got that from…but I will take it). He spent some time with Piper (his cousin who is 2 months older) a few weeks back and he observed her babbling and the next day we heard a lot more babbling out of Chance. The therapists have told me many times that he will learn a lot from his peers if he has the opportunity to spend time with them.
The urologist put Chance on a daily antibiotic in May to try to combat the (what seems like) constant Urinary Tract Infection battle. He started that about mid-May and would you believe by mid-June…yes…he had another Urinary Tract Infection. This is a battle I just can’t win. The nurse (JoAnne) that works with Chance’s Urologist is an angel and thankfully she tries her best to give me suggestions when I call with questions. I am now starting to use the “sterile” technique with cathing instead of the “clean” technique…hoping that helps us win this battle.
On a fun note… Amy, Brett, Chance and I went to the Museum of Life and Science this past weekend. Brett will be 4 on July 5th and he was the funniest little person. He is so talkative and full of energy. I just love being around that family…they are so much fun. Chance was really taking in everything around him. The highlight of the trip for me was that the bear came right up to the fence where we were standing and I know Chance got to see her. He got a little excited. I will say it was hot as heck and Amy and I were at that point just ready to find some indoor activities. Oh and I almost forgot…Chance was 16 months old on Saturday, June 26th.
July brings us to another Spina Bifida Clinic appointment. Chance will have a CT Scan at 8am and then we will go to Lenox Baker where we will see the neurologist (and pray very hard that everything is great with the CT scan), urologist and the developmental pediatrician. Assuming everything is ok at clinic, we will have pre-operation appointments at Duke Eye Center on July 28th and then the eye muscle surgery is scheduled for August 2nd.
Please continue to keep Chance and our family in your prayers.
What can I say other than I have a delightful little boy that makes me smile from ear to ear with pride.
Chance is really coming along with cruising…he is finally to the point where he finds it easier to walk beside the couch that to fall down and crawl to the next point on the couch that he wants to get to. The PT team now has me practicing at home with him by holding his hands and letting him take as many steps as he will. Sometimes…he goes and goes…other times it is 2 or 3 steps. He is a trooper and he tolerates us pushing him along.
Out PT sessions are now moving to the pool next week. We are hoping that he likes it and the resistance of the water will help him to improve his muscles.
We started Speech Therapy today. Most people say to me…Isn’t it kinda young for speech therapy? Chance was not progressing to eat foods with texture…so we were stuck on the pureed baby foods and a few other things. Also, several of the doctors told me that eating foods with more texture will help him learn how to use his tongue more and help on his speech development. He says bye and waves and also says DADA…but maybe this will improve his sounds also.
We have eye muscle surgery scheduled on August 2nd. This will help to align his eyes and he may not even need to wear the glasses after the surgery.
Overall, things are going well. He likes to laugh and still loves to be outside.
It has been a while since I added an update to this page.
Chance has been doing great and progressing along. We went through a rough patch in April...he had a reaction to the MMR shot and then got pneumonia. I think he is finally over that hump and things are back to normal with him.
Physical Therapy at UNC every week has really helped with his improvement. They have him practicing on a treadmill (life gait) and crawling through tunnels. He now pulls up like a champ and is starting to cruise along the furniture. Soon, he is going to take off and I am not going to be able to catch up.
He had an appt with the endocrinologist today…everything still looks good. He was growing well and his weight has really leveled out…so they are very pleased. Today, he was 31.5 inches tall and weighed 25.75 lbs.
We have 3 more appts in May, 1 in June and if everything goes well…none in July. A month without doctor appointments doesn’t seem realistic.
I have had a hard time coming up with the words to write about this past year. (so my entry is a little late)I can’t even think about this past year without crying. I knew I loved Chance when I was pregnant and I knew that I was prepared to fight for him to have the best life possible BUT when I laid eyes on him for the first time…my heart melted. I knew he would have me tied around his finger the rest of his life. I love how this year has been a year of lessons for me and Chance. Chance has been learning about the world and I have been learning from an amazing little boy. Every time I go through a therapy session with him and I see how hard he works at only 1 year old, or when he has just accomplished something and he flashes a grin at me, my heart fills up and I want to shout on the rooftops look what my boy just did. (My Facebook friends have endured the updates on Chance, thanks!) Chance is a fighter….I am in complete awe of him sometimes…for instance…when you see your son after a procedure on his brain and he is sitting up in the bed looking around while riding the glass elevator to his room and surgery has only been over an hour. Chance has a way of hugging you that lets me know he loves you. I love it when he laughs or when he grins…even at the same thing that I have just done 50 times he will laugh at number 51 too. Chance has made me a stronger person. He has made me realize the small things don’t matter that much. In a short year, he has made me realize that a lot of things everyone takes for granted is not promised to any of us. I have also realized that everyone doesn’t have to agree with my decisions or even be my friend…but my most important role on earth now is to make sure Chance has every opportunity possible. Thank you god for sending me such an incredible son!! Happy Birthday Chance!!
Zulmie (Chance's Therapist that comes to our home on Fridays) has been recommending that I get a toybox for him because he likes to put things in and out of containers. So, I finally broke down and said ok...I will spend the money.
We got the toy box that I ordered on Monday. I had a few minutes to help Chance today and showed him he had toys inside. I sat him beside the toy box and he pulled himself up on the toy box.
I got a few pictures in an album above.
Thank God for his blessings.
It has been a while since I wrote...things have been crazy for us since the New Year. I have not changed companies but I have changed jobs. I am now working in Finance again...and have been working A LOT of hours, which has made things a little more challenging than usual at home with taking care of Chance and the therapist and doctor appointments.
Chance got SMO (Supra-Malleolar Orthosis) on January 14th. Hopefully, they will help with the alignment of Chance's feet and allow him to be a little more stable when he gets to the standing and walking stage of development. He doesn't like the braces when you first put them on but after a few minutes he forgets he is wearing them. We have also switched to Physical Therapy at UNC. So, his therapist and his orthopedic doctor will be able to communicate about things going on and treatment plans.
Chance is still army crawling without a lot of leg movement, but we are working on that in Physical Therapy. He is getting very interested in pulling up but he can't quite figure it out yet. He does love for you to hold on to his hands when he is sitting down and he uses your hands to pull to standing. His face lights up when he stands up...you know he is so proud of himself. (And I am beaming from ear to ear everytime that he stands) I know he is going to eventually pull up and walk...it is just the waiting that is the hardest thing. Both of his therapist tell me that he is doing good but...it still doesn't help sometimes.
I am excitedly planning Chance’s first birthday party. I am really wondering if he is going to be interested in the cake as other kids seem to be. Chance just is not interested in “table food”. He LOVES his baby food and Gerber Puffs but other than that…he has no interest. Chance has been holding his bottle on his own since just after Christmas and just this past Saturday…he started putting his Gerber Puffs and Gerber Yogurt Puffs in his mouth on his own. Although, I did look and he was trying to put 4 puffs in his mouth at the same time. J
We have several doctor appointments this month. He has a Renal Ultrasound and follow-up Eye doctor appt on Feb 12th. Then, he has a CT scan, appt with his urologist and appt with Neurologist on Feb 25th. I am praying that all of this goes well. Chance has had a few Urinary Tract Infections since Christmas, so I am a bit concerned as to what is going on with his bladder/kidneys.
WOW...the last few weeks have been packed with a lot of firsts for Chance.
We had a good accumulation of snow on December 18th. Jason, Chance, the dogs and I went out to enjoy it a little on Saturday the 19th. Chance didn't care for it too much...it may be because mom bundled him up so much. Jason reminded me that it wasn't "really" Chance's first snow because it snowed on March 1, 2009 BUT we were not home from the hospital to enjoy it...so in my mind this is Chance's first snow.
On Sunday, Jason worked a great deal with Chance. He is better at making Chance work even when Chance gets frustrated than I am. All of the work proved to be worth while....Chance started army crawling on Monday. He doesn't move his legs a lot but he does pull himself forward with his arms. It has made him more mobile and our dogs are learning that higher ground is the best place for them.
Well...Christmas was the last big first for Chance. Christmas Eve was quite eventful and tiring for Chance. We went to Carver Christmas and then went to Turner Christmas. By the time we got to the Turner's he was asleep and fussing and angry. We left and Chance went to sleep on the way home and ofcourse when we got home, he was wide open...so we got in bed about 1am on Christmas morning. Santa didn't come during the night but we were due to go to Susan's and Ronnie's first thing on Christmas morning anyway. So, Santa came to our house while we were at Grandparent Carver's. It was so much fun. Chance's "big" present from Santa was a wagon. We took it out for a spin around the farm on Sunday...he seems to really enjoy it. Not quite as confined as his stroller....plus the doggies can ride with him. :-)
Chance had surgery on his back on Monday. This surgery was to improve the appearance of the scar from his very first surgery. Chance did well with the surgery BUT his body didn't respond well to the anesthesia. This is the first time it has happened but his bladder didn't start responding until late Tuesday. So, this is a lesson learned and something for us to note for the future. They were able to get several blood draws that have been needed for some time while he was having the procedure. This should give us some more information in the next few days about some of his hormonal conditions that are possible with Spina Bifida and Optic Nerve Hypoplasia.
Chance is thrilled by our Christmas tree. He looks at it with the biggest eyes of wonder sometimes. It is so cute.
WOW...just 9 days until Christmas. The first Christmas with Chance. I am looking forward to it so much. BUT....I haven't finished Christmas shopping yet...so I better get on the ball. Amazing how the child coming on the scene has changed my ability to stay organized and ahead of schedule. :-)
Last year at this time, I would never imagine that I would be able to sit down and write that I have so much to be Thankful for in my life. Jason and I found out last year on October 2nd that Chance had Spina Bifida. I will never forget that day, as it changed my life forever. I had the full roller coaster ride of emotions and finally found peace that I was having a baby..that was the only way that I could think about it and get through all of the unknown.
Fast Forward to today...Chance is 9 months old and there is nothing that has ever changed my life in as big of a way as he has changed me. Chance has really changed my way of thinking about life and even made me see that there are real life miracles happening around me everyday. I am so Thankful to have been given the opportunity to have this special boy in my life. Every time we uncover a new skill or I can figure out a way to make him laugh. I feel like I have conquered the world and given Chance another opportunity to make the best out of life. Don't get me wrong...I still have those days and even weeks when I feel so mixed up and confused about things and wonder if I am doing the right things. I also wonder from time to time if I am really cut out for this job. But I am trusting that the task was given to me for a reason.
Chance's shunt revision was a success.
I was unhappy with what the pediatric orthopedics doctors at Duke have been telling me so I have contacted UNC and have an appt with them on December 17th for a second opinion.
Chance got glasses on 11/20/2009. He has done very well with his glasses. He wears them really well and doesn't fuss a lot about them.
Chance is still not crawling. I am trying to remain hopeful that it will happen some day soon.
Chance had a CT scan on Friday that showed the ventricles in his brain were enlarged. This indicated that the shunt placed in March was not working properly.
Chance had surgery this morning to replace the shunt. We had to be at the hospital at 6am. Chance came through surgery like a champ. He is such a trooper.
He is resting comfortably now and if everything goes well, we will be coming home late Tuesday.
We have a little bit of a battle now to get everything back on track but I am sure with prayer everything will work out perfectly.
Time has flown by these past few months. I can't believe that Chance is 7.5 months and OMG...stores are putting out Christmas stuff. The crisp fall days are helping us to make many memories with Chance outside.
Things are going well for us. I have FINALLY resolved myself to not worry about the milestones and the big differences in Chance's development and just focus on the blessings that Chance brings me daily.
Chance has had many new things in the past few weeks. He got his first tooth on 10/4/09 and we heard his first laugh on 10/7/09. His laugh caught us completely by surprise. He was laughing at our dog barking of all things. We have tried many times to get this duplicated for video but no such luck. He has also accomplished sitting up when we sit him on the floor. We are working on getting himself into sitting position and getting on all fours in Physical Therapy.
October is full of doctor appointments at Duke. I am praying that everything goes well.
Chance is becoming very interactive with others. He is becoming his own little person and is SOOO much fun. He is sitting up some but still has to have a little help on occassion.
Chance is now actively involved in Physical Therapy every week at Duke, Developmental Therapy at our home and Governor Morehead Preschool participation at our home. He is such a trooper and he actually acts as if he loves the workouts (and attention). We are working on Chance's trunk control, sitting up from lying on the floor, creeping and cause and effect stuff.
Chance is really starting to recognize his parents and people he knows versus strangers. He also has started to hold his arms out for me and Jason. The best thing in the wolrd is when I pick him up in the afternoon, when he sees me he smiles really big. It makes any bad day great.
Chance's blood work came back in the normal ranges on the two tests conducted by the endocrinologist. They still have some concerns regarding his ACTH and cortisol levels. He has another check-up in December.
I am so thankful everyday for how well Chance is doing. God has blessed our family so much.
Chance has had lots of visitors in the last few days.
This past Friday, he was visitied by his Developmental Therapist and the coordinator for Governor Morehead School for the Blind. He loved playing with his Developmental Therapist. The coordinator for the Governor Morehead School explained Chance's condition to me FINALLY and said that the teacher that will start working with him near the end of August will be able to give me more information.
Chance's condition with his eyes is Optic Nerve Hypoplasia. This sometimes also effects their growth hormones, thyroid, etc. So, we are having a full blood panel work up done on him. The coordinator told me after observing Chance that she thinks this is effecting his peripheral vision. I am worried to death right now about what else could be going on that I don't know about yet.
Chance had his first Physical Therapy session at clinic on Monday. He did WONDERFUL. He rolled over from his back to his tummy and held his head up high. He also scooted his legs a bit and the therapist said she thinks he will be "creeping" soon. We are going to be working on his trunk muscles for sitting, his leg positioning and the tightness in his ankles.
I found this wonderful book and website to help children understand Spina Bifida. http://www.myspinabifidabook.org/ I am so glad I am finding things like this to explain things to Chance as well as other children.
Time flies by so quickly and I don't get to update this site often enough.
Finally, we have Physical Therapy scheduled. Chance's first appointment is on August 10th. I am excited to get this going. I have so much hope that it is going to improve things for Chance. This will help us to know what to do with him on a regular basis to help him meet his milestones a little better.
Chance's clinic visit was not a pleasant experience. The first time I went, I thought maybe I was just overwhelmed and that is why the day was so bad. Well, this time was worse than our first visit. We had an renal ultrasound at 8am to check his kidneys and bladder. All of these tests are done at the Children's Hospital at Duke. The ultrasound technician was visibly frustrated because Chance didn't pee when he wanted him to...I told the guy...he is only 5 months old he doesn't know what you want him to do. So, we ended up having to cath Chance for the ultrasound, they also tie the baby's arms down. Needless to say, Chance screamed the entire time and I cried. So, he was already upset and then we had to go to clinic which is down the street. So, we got there and we were seen right away by the neurosurgeon team. Got a great report...everything looks good. YEAH!!! Then the Orthopedics team came in. The intern that came in first (Chad) was super nice. He answered my questions about things and so far they don't think Chance needs any braces or devices to help his legs. I ask about the "frog leg" appearance that the Physical Therapist pointed out and they told me it was not a big concern for them that it was a baby thing and he would grow out of it. So, then we are shuffled off to do Chance's vitals. Chance weighed 21 pounds 9 oz. and was 26 inches long. The nurse then planted us in the waiting room...2 hours passed and they finally called us back at 12:45 to a room for the next docotor visits. Then the nurse says well, the doctors take lunch from 1-2...so someone will be with you either before lunch or after lunch. Chance's Urologist came in and he told me that he wanted me to continue cathing Chance 2 times each day to be on the safe side. He also wanted me to record each day the output. Right now, Chance does not seem to mind the cathing...so it is not that bad at this stage of the game. So, we sat there until 2:15 to see the Developmental Pediatrician. He came in and ask me a few questions and checked Chance out and he left. I was feeling ok about things. Well, then he came back in the room and said "Do you know where is at on the weight growth chart?" and I said yes, above 95%...he said yes and that is unacceptable. He said he was going to get the nutritionist to come and talk to us. He made me feel like such a bad mother....I heard him tell the nutritionist outside the door that just because the mom is overweight doesn't mean that Chance needs to be...well, I started crying. So, the nutritionist recommended that we start offering more baby foods and oatmeal. I have made a very conscious effort to follow their advice and I have found now that Chance has gotten the hang of eating that he is ok with less formula. So, he gets 2 TBSP of oatmeal, 2 TBSP of veggies, 2 TBSP of Fruit, 4 oz of juice and then the rest is his formula. He has cut back from 36oz of formula to 30 oz on most days. So, hopefully...it will slow his weight gain some. Plus, getting more active will help.
Chance starts at the Governor Morehead Pre-School program in September. They are coming to visit him for the first time on Friday, August 7th.
Chance is still rolling over from his back to his tummy once in a while. I think he got bored with it because he isn't doing it as much as he was once upon a time. He will sit with us on the floor for very short periods of time but often leans back against us for support.
The summer is passing us by quickly. I can't believe in 3 weeks Chance will be 6 months old.
I am STILL looking everyday for a new job. Nortel is selling off parts of the business and it is just a matter of time before I am told I don't have a job. I send at least 5 resumes each week even for jobs making MUCH less money than I make now and I still hear nothing. I just keep hoping and praying that I find something soon.
I know everyone thinks their children are amazing and I am one of "those" mothers. I think he is the most amazing little boy. Well...maybe not so little....on July 13th...he weighed 21.6 pounds. YICKS. Yes, I had to go buy MORE clothes and 12 months this time. The 9 month attire only lasted 5 weeks.
He had an appointment with the urologist on July 13th and we got a mixed bag of news. Some things look really good... others there are a lot of questions. Looks like there may be more surgeries in our future. I am also back to catherizing him twice a day. I was really depressed about this for quite a few days but I finally had to tell myself that I have a great little boy and that is all that matters.
Chance can roll over from his tummy to his back but doesn't make an attempt to go from his back to his tummy. (Probably because he seems to hate Tummy Time).
The physical therapist recommended that we get a jumperoo for him to start helping him to work his legs a little. I finally found one half price (Thanks Lisa). He seems to love it and once he got the hang of it, he will bounce his legs a little.
Still trying to get all of the paperwork in order to get his weekly physical therapy started...yes, this has been in the works since June 9th. The request was first made then and we still haven't gotten our first appointment.
We had a follow-up eye appointment on July 15th. The opthamologist are now sure that Chance can see. GREAT NEWS!!! They do think he is delayed in developing his eye sight and have referred him to Governor Morehead School. We should be hearing more about this and what they can do to help us in the next few weeks.
Well, we are off to Spina Bifida Clinic and some ultrasounds at the hospital tomorrow. I was thinking to myself this morning that Chance is going to think that I am the lady that spends time with him when we go to the doctor offices. :-)
Wow...Chance was 4 months old this past Friday. Sometimes it seems like the time is flying by and at other times, I think it is dragging. I know one day I will look back and think about how quickly everything happened but right now, I can't wait for him to get older so I can really find out what his true abilities vs disabilities will be.
We are still working daily on helping him to learn to roll over and giving him lots of tummy time. He is pushing himself up and holding his head up a little bit. He is behind the typical milestone charts. The physical therapist recommended that he wear these shorts called Hip Helpers to try to correct the "frogged" appearance of his legs. Chance absolutely HATES the shorts. He cries and frets when you put them on him. So, Jason and I are both softies and end up taking them off after about an hour. (We have to get better at making him wear them) Chance has started to give out the occassional smile. It is hard to come by and you really have to work hard in order to get a smile but I do know now that they are in there. :-) He has started to coo alot. And one of my favorite things right now is he just learned to stick his tongue out on Monday.
He outgrew his infant car seat/carrier, so we bought new convertible car seats. So, now I actually take him out of his seat and put him in dad's car in the morning. It makes it even more difficult to leave him in the morning.
We went to the emergency room on June 22nd because he was displaying signs that there was something wrong with his shunt. I called the neurosurgeons and they said bring him to the emergency room now. So, we went and spent 4 hours in the emergency room and everything checked out ok. We have been having problems with constipation for over a week and the doctors have given him different things to help. I think he got a little too much help because this weekend was diarrhea time. So, the doctors said I would just have to figure out the correct dosage. I hate when they say something like that...I want to say HELLO...I am not a doctor...I don't want to overdose my child.
Jason and Chance continue to have their evening golf cart rides. Even the dogs and I have started to join in with them on occassion. I ask Jason just last night...what in the world are we going to do in January when it is freezing cold and we have spoiled him to the fact of riding on the golf cart...Jason said well...guess we better get some warm coats. Chance doesn't let us skate by on things and not get HIS way. :-)
July is a busy month for us with doctor appointments. He has a big appointment on July 13th with his urologist and then clinic on July 23rd. We also have our 4 month checkup with his pediatrician coming up on Friday.
I have been struggling a lot lately with feeling sad that my child isn't doing what other children that I am seeing and hearing about are doing. I knew going into this that it was going to be difficult but I never knew my heart would break for him as much as it does. I just want everything the best as it can possibly be and I don't want him to feel unloved or "different". He is the most special thing in my life and I try everyday to make sure that he knows that he is special and loved. I know that is all I can do and is the best thing that I can do but I do feel so helpless at times.
This has been a very hard week for Chance's mom. Tuesday, Chance had a Physical Therapy evaluation. He has been seen by physical therapist before but this was the first official evaluation where a plan was set up for what we will need to do and what the concerns are now. I guess it is easy to live in a universe that is not reality until it is thrown in your face.
Chance is doing well in some areas but some areas are causing great concern for the doctors. It seems that even though Spina Bifida is his diagnosis all of his specialist are more concerned right now that Chance is not smiling on a consistent basis. There has even been mention that this is a warning sign for autism. We go back to Duke Eye Center on August 26th. This will hopefully determine if it is an eyesight problem and if it is not, then other things will be explored. It is very hard to go through every day and not see a smile out of him. I wonder is he hurting, or is something wrong that I am not recognizing.
We are also moving to Physical Therapy on a weekly basis because there are some concerns about his leg movement and making sure that he is getting full movement out of his legs in order to be able to possibly walk.
I cried most of the afternoon at work on Tuesday but all I have to see is his face to forget all of the bad stuff. I have a lot more work to do each night now with Chance but every minute that I get to spend with him is cherished. I wish some of them were not at 2am but that is a whole different issue. :-)
Jason and Chance spend time every evening outside on the farm. He LOVES being outside. So, he and Jason go and look at the blueberries and blackberries. Most of all he likes riding on the golf cart. Yes, he is turning out to be more and more like Jason every day.
My dad and Chance are doing well during each day while I am at work. It is so obvious that Chance is doing his exercises because there were some improvements that are very noticeable. Dad tells me everyday how much he enjoys keeping him. He is getting a good amount of exposure to Lowe's and Home Depot. I wonder how long it will be before he wants his first power tool?
Thanks to all of those who have supported me this week and reminded me that I have a wonderful baby boy that is a miracle and I was chosen to be his mom because I CAN make a difference in his life. It is sometimes hard to remember that when the bad news is flowing and I want to have a pity party for myself.
Chance was 3 months old yesterday. Man...he is getting to be a big boy. On May 14th, he weighed 15lbs and 12oz. We found out that he is allergic to milk and had to change him over to a soy based formula.
We are still having some challenges developmentally. The doctors have started to follow his eyesight. The opthamologist at Duke said it was early, so she wasn't ready to say that he was blind but she couldn't definitely tell us that he had good vision. She could tell that he has a small optic nerve. This could be leading to some of the other "milestones" that Chance is not achieving.
I am back at work now. My dad is keeping Chance for me and is doing a good job. I was doing his developmental exercises and physical therapy on Saturday and I could tell my dad has been working with him because he was able to do more than he had just a week before. I am thankful it worked out because I don't have to worry about him as much as I would somewhere else.
This experience has really taught me to try to roll with the punches and take one day at the time. I was always such a planner and everything had to be laid out and happen just according to schedule but with Chance I have learned to celebrate the small things and don't worry so much about what should be happening. At this point, having him look at me when I feed him or when I play with him is the most special thing in the world. I want so much for him to smile and laugh and be like the other kids that I see his age but I am trying to tell myself only time will help with all those things.
Knock on wood....if we make it through the week this will be the first week since he was born that we have not seen a doctor. That is actually an exciting step in his life.
Thanks for all of the support and please continue to keep us in your prayers.
We have been home 17 days now!!! I feel like I have been living at Duke with follow-up appointments but at least we are home.
Chance went for his follow-up hearing test yesterday. He passed in the right ear. He didn't pass in his left ear so we have another follow-up appointment for his left ear.
He got all of his stiches out on 04/16/09 an was able to take his first tub bath on 04/17/09. He acts like he likes the water. He splashes around as much as they can in those little tubs.
Chance is having his circumcision tomorrow morning. I am not looking forward to that because we have 5 doctor appointments after the circumcision.
Chance came home on Sunday afternoon. I am so happy to have him here with us. I am figuring out that I will never get anywhere else on time and won't get as much accomplished as I thought I would but having him here is worth it.
Our dogs have adjusted well to having the baby here....they get worried when he cries and they go to his room to check on him, but other than that...they seem to not even notice he is around.
Debbie,Emily and Luke came over this afternoon for Chance's first photo session. Debbie told me that I could go through and discard what I didn't like...but I love every picture of him. (The pictures are in the album 04/09/09 above) Thanks for taking the pictures Debbie, you are wonderful!!!
Chance went to the pediatrician on Tuesday and he weighed 12 pounds and 2 ounces. Yes, we are about to outgrow more cute clothes that he never wore!!
Chance has done so much the last few days and we can FINALLY see the light at the end of the tunnel for taking Chance home. He is such a brave and strong boy. I can't wait to share the stories of his pregnancy and the last few weeks with him when he is older. I shared with Rev. Herbert Brown this past week during one of his visits that Chance is such a blessing and a living example of how prayers are truly answered. I honestly want to scream it from the rooftops and tell everyone about Chance. I had the opportunity on Friday to share Chance's story with some students that are in training for pediatrics. I also had the wonderful opportunity to share our story with another mom that just found out the child she is carrying has spina bifida. Those first few days and weeks are the most agonizing time that I have ever lived through, no one knows how much you question everything about life, about what you have done to deserve this and how guilty you feel as a mother and constantly think what could I have done differently to help my baby. I hope that I was able to give that mother some hope and give her enough information about our experience that she is guided to make the right decisions. Enough of that...let's talk about Chance!!!
Chance had an ultrasound on his kidneys on 04/01/09. The doctors saw a small anomaly on the ultrasound but they told me nothing that they were concerned about and was typical in babies Chance's age. On 04/03/09, he had a VCUG, which is an X-ray to show if there is any reverse flow of the urine from the bladder to the kidneys. This test also proved out to be ok. He had a hearing test on 04/03/09, and unfortunately, he didn't pass the test in either ear. The technician performing the test said he was a little too noisy for the test so we are suppose to have a follow-up appointment in 2 weeks. The orthopedic team came by on 04/02/09, and they looked at his legs and their preliminary evaluation is that with the movement that Chance has thus far that he will have little to no limitations with walking. (I told you he is really a little miracle).
I have been getting trained the last few days at the hospital for a few things that have to continue when we get home. So far, everything that I have been learning is not too hard and I feel like I can do it when I get home without being too nervous.
We are still looking forward to going home soon. We have been told a day but I am afraid to post it right now because I don't want to jinx it. I will give you all an update as soon as I know for sure we are getting out of here.
Chance has had a lot going on the last few days.
Sunday, the bandages were removed from his skin graft and we found out the graft was a success!!!
Monday, Chance was allowed to lay on either side. He didn't like it for more than about an hour at the time but admittedly it did look a little uncomfortable.
Tuesday, we were given the green light on his laying on his back for 20 minutes 3 times per day and I was told that I could hold him again. So, needless to say his first 20 minutes on his back was spent in my arms.
Wednesday, Chance's doctor actually mentioned the 4 letter word that I have been wanting to hear during their rounds....it was HOME!!! He has a dry erase board in his room and they wrote up a list of 10 things that we need to accomplish before he can be discharged. We started on the list today and we have completed 1.5 of the items. They said maybe next week he can be discharged. I will be so happy to be home. I really enjoy the opportunity to be with Chance but at the same time...I miss being with Jason very much and I miss my dogs and even just being in the comfort of my own home. I can't wait to show Chance his room, the dogs, the farm and just be home. Jason came to visit on Wednesday afternoon and held chance on his back for the first time. He has done such an awesome job taking care of Chance. (I got very sick on Saturday and ended up in the emergency room for 28 hours and Jason stayed with Chance the entire time and took care of him...they did some male bonding).
Please continue to keep us in your prayers and say an extra one that we are able to come home next week.
Chance is 1 month old today!!!
Chance had a skin graft on Tuesday. His bandages won't be removed until Sunday and that will tell us if the graft was a success. We are praying it is a success so we won't have to do any more surgeries.
Even better news is that he moved out of Intensive Care!! He moved to a regular hospital room and I am staying with him now. He is in a little crib and I have a chair that folds out to a bed but I am happy to just be able to spend some time with him.
This is a step in the direction of home...so we are excited. Still crossing our fingers that we make it home by Easter. The Easter Bunny would prefer visiting Roxboro for Chance!!!
Preacher Brown was Chance's official first guest!! He has been so diligent in supporting us and praying for Chance, we are so glad that he got to meet Chance.
Chance had his first visit with his Aunt Marsha and his cousins Heidi and Kassi. I hate to say this but he did wake up and look around at the world just after they left. (Sorry Girls) :-)
Aunt Carol and Ray stopped in to say Hello today also. We are enjoying getting our first visits from everyone.
Chance is 23 days old now.
Chance's plastic surgeon decided to delay the skin graft. He wanted to give the wound the weekend to heal more and then decide on Monday if he will do the graft on Tuesday.
The nurse practioner and attending physician in the NICU are still talking about us getting a room by end of next week.
Chance is 21 days old now.
Chance had surgery on Monday to place a shunt. The shunt is used to relieve fluid that was forming in the ventricles of his brain. The doctors also took the opportunity to clean the wound from his first surgery while he was under anesthia. Chance is recovering well from the surgery. The plastic surgeon continues to monitor his wound. The plan is to monitor the wound the rest of the week and possibly do a skin graft on Monaday in order to help with the healing of his wound. The doctors are going to monitor his wound this week and possibly place a skin graft on this upcoming Monday. The doctor told me yesterday that we have between 3 and 4 more weeks in the hospital. The doctors are going to try to get a room outside of the NICU where I will be allowed to stay with Chance until he is ready to go home. They said they may be able to have us a room by Thursday of next week (March 26th).
Chance is starting to observe things around him. Jason came to visit today after work and when Jason was talking to him he stared at Jason with the biggest eyes. It was the cutest thing. He has a toy that makes farm animal noises and Jason enjoys playing with Chance with that toy.
The nurses told me to bring in a mirror toy for him, so I plan to carry that in for him tomorrow to celebrate his 3 week birthday :-)
(Somehow, I have a feeling that we are going to have a spoiled rotten little boy)
Chance is 16 days old now. Wow!!! That is hard to believe. He brings so much joy to my life and gives everything so much more purpose than it has ever had before. My heart breaks every time I walk out of the door to go home from the hospital. His nurses tell me everyday that I need to take breaks and go and eat or pump or for a walk but I don't want to miss a single minute that I can spend with him doing anything else.
Chance has had a rough week. Tuesday, we found out that he would need a shunt placed. Then, we found out that he had a urinary tract infection. Finally, the wound from his first surgery is seperating and not healing as well as it should be and the doctors told us we are in for a longer stay at the hospital than originally anticipated. Chance will have the shunt placed on Monday morning. Please keep him and his family in your prayers.
Even through the rough week and all of the things going on with him, Chance has been a trooper. He doesn't fuss a lot and he seems so happy and content.
Jason and I got to hold him for the first time on Wednesday and that was the best feeling in the world!!!