Friday, March 11, 2011

Running and Running and Running

Mom here and I am EXHAUSTED! I feel like we are constantly in motion running from taking kids to daycare, mom to work, returning phone calls, kid to the doctor, running back home to meet caseworkers and new therapists. Every night this week we have had someone at our house at 5:30 either to work on adoption for our girls or to assess Andrew or to renew our CPR certification. And then today baby girl vomiting canceling out my day of work. AAAHHH the joys of parenthood.

Our big boy Andrew is doing well and is such a source of happiness for the whole family. He has been on a seizure medication called Topamax for some time now to reduce his breatholding and hyperventilation. He seems to be doing somewhat better on this medication but it has not cured breatholding and hyperventilation, which are both part of Rett Syndrome. He was placed on a nasal steriod to help reduce swelling for mild sleep apnea and a 24 hour EEG was recommended to be done from his sleep study results. Not really wanting to do that one just yet as the last time around it lasted 3 days due to faulty leads. He also got a new team of therapists, PT, OT and Speech as our insurance changed as he no longer qualifies for ABA I am super excited about getting him back on track with therapies. He finally got his wheelchair after battling with insurance and medical equipment companies for 2 and 1/2 years. Although Andrew can walk his endurance is weak and long distances aren't possible. This makes things so much easier for trips to the zoo, sea world and Morgan's Wonderland as well as the mall. YEA for Drew!!! Our big source of stress lately has been what will Kindergarden be like next year for our sweet boy. We will be meeting with a special ed director in 2 weeks to determine what kind of placement will benefit him best. Andrew continues to struggle with hand function and movements and when his hands aren't wringing he is asleep. We are hoping to find something besides his arm immobilizers to help with this. We will be taking him to the Rett clinic at TX Children's in 2 weeks so stay tuned for updates.

One big YEA for our family is that our girls will be adopted in May. Could this really be??? Finally after almost 2 years of fostering they will forever be ours. I love my girls! And I really love our new baby Norah Grace. She is such a sweet baby and reminds us of how precious Andrew was at this age. Thank you God for our sweet kiddos. Before we know it they will be in junior high.

Tuesday, October 12, 2010

Consistently Inconsistent

I read this subject title on an email today and immediately thought of our Andrew. He has had various therapies over the last 2 years as well as school. Every thing we have attempted to teach Andrew over this time has relied on data, evidence basis to prove that he understands or can complete a task. We have had a hard time proving to educators and therapists that Andrew is really still inside this little wandering body and knows more than what he shows. Most people are not as positive about Andrew's skills as we his parents are. I guess it's only natural but it really doesn't help in that the data collected on our sweet boy looks like a bunch of mountains. He has days where he is spot on- performing well, eye gaze great and leading us to believe- he knows so much. And then the next day or next few days he is non responsive, bored and data is 50% or just a chance that he got the correct answer or performed the task correctly. So frustrating!!! With Andrew I try to think about how it would be if I struggled with breathing- alternating between hyperventilation and breathholding while my hands kept moving even though I am trying to make them stop. I don't think I could concentrate long enough to make choices , pay attention at school or answer questions through eye gaze. More than anything I just want educators and therapists to give Andrew and other children/adults with disabilities the benefit of the doubt. It's when you least expect it that these folks really shine.

Wednesday, October 6, 2010

A Whirlwind of Emotions

It has been forever since I have updated all on our family. It has been a year that we have had two precious foster daughters with us and what a year it has been. They have truly changed our lives and Andrew's life in so many wonderful ways. What can I say? We are blessed! Rose is our crazy and outgoing four year old, always nursing Andrew and bringing him out of his room to engage with the family. She is just a mess and makes me laugh so much. With her age comes drama though and wow I do not look forward to teenage years with her. Madison is our baby and we like to call her our "chiquita." She is small and had such health problems for the majority of time she has been in our care. Doctors thought of her as failure to thrive, developmental delay, possible Turner's Syndrome. Nope- she is walking, talking and thriving so well. She may have some learning challenges in her lifetime but she is doing soooo well and we couldn't be happier with this little girl. She is super dramatic too and loves to steal Mom's attention from her siblings. We are in the process of adoption for these two and I can't post pics yet. We were blessed when their parents rights were terminated this summer and while it is very sad it is also a wonderful for these girls. They are a joy and our life is so much fuller because of them.
Andrew is doing well. In March he had surgery for a feeding tube as he completely struggled with losing weight and his ability to chew and swallow. He got to where he was starving right before our eyes. Since March he has gained almost 10 pounds! YEA for the now big boy who is soo tall and really making his mommy sad at how much he has grown. I was just hoping he would stay 2 or 3 forever. He is now in an inclusion class at school that we fought to get for him and he rides the bus to and from school. He just loves it! He will also be getting nursing services soon. This will be an adjustment for him and for us as he has had the same caregiver for almost 2 years. He is really needing a higher level of care due to the feeding tube and this would allow for someone to go with him to and from school and stay with him. Another set of eyes but also a helper for him and I hate it that he has to always have someone but he needs it. We have really gotten use to someone always being in the house for him during the day just not on the weekend. He is still our happy boy, a real angel, smiling and just loving all of us and life everyday. He is like seeing a glimpse of Heaven everyday and I am so thankful for everyday we have with him.
We will have a new arrival in January with our second baby and fourth child, a little girl. Still don't have a name yet but am trying to work on it. We were more overwhelmed with the idea of having another child in the home but as it gets closer we couldn't be more excited about her. So, that makes 3 new children to our family in around 18 months of time. Wow! It is a a bit crazy but I wouldn't chose it any other way. We prayed for so long for God to bless our family with more children and He has!

Saturday, January 9, 2010

So Much to Say

Where do I begin? It has been too long since my last post. We have adjusted well to being a family of five and have enjoyed so much being the parents to two beautiful little girls. We had no idea how much we would learn and grow as parents and how quickly we could become attached to someone else's children. In other ways we had no clue how easy we had it with Andrew. He is the sweetest, easiest child ever. He has never talked back, told us "no", or needed timeout five times in a day. It was definitely a change for us taking on the girls, especially our little three year old, Rose. It took Andrew some time adjusting to have siblings as well. After the first two weeks he would cry at the dinner table if the baby cried or even if someone else was getting attention. It was definitely a challenge when all three kids would go off crying or yelling. WOW those nights were fun. Rose has grown such an attachment for Andrew and it is something I always wanted for him. She calls him her "buddy" and she knows that he is special and different yet treats him like her best bud. We often find her talking to him, feeding him, and singing to him when he is upset. It is precious!

Madison is our little one and she is such a cutie pie. When we first got her she couldn't do anything but sit and stare. She had no affect and was severely delayed. With help she is now scooting around the house and playing with toys, laughing, playing peek-a-boo and babbling. It's a fun time for her right now. She is still delayed and needs a lot but she is getting there and we sure do love this little girl. She does have digestive problems and asthma and was actually hospitalized over the holidays but is now doing better. Precious baby!

I think that part of my staying away from this blog has been due to confidentiality issues with now being a foster parent. I am always trying to be careful about what I can and can't say and for sure I am not allowed to post pictures, which stinks, because we have some really cute ones. Being a foster parent is a challenge in a lot of ways. In some ways I have felt like I have no rights and that the biological family is always a priority. It has been hard but in the end I know that these girls are worth all the pain and frustration that we have and are yet to experience. They deserve a stable, consistent, and loving family and if they ever become available for adoption we will for sure go for it.

Andrew has really enjoyed the new additions to the family, but has had some real struggles lately. He has been unable to put on weight and has had lots of trouble with chewing and swallowing food, which have always been his favorite activity. It takes him an hour to eat a meal and it really only half of what he could eat a year ago during meal time. We have tried nutritional supplements, giving him fatty greek yogurt everyday for breakfast, cooking food in avocado oil, but no luck on his weight. We actually went this past week for his annual aptmts at Texas Childrens. Doctor Motil, his GI, has recommended a G-tube (feeding tube). We knew he was headed down this road as most children with Rett battle feeding and swallowing during their life. We saw his GI back in September and she gave us these last few months to keep trying and to really think over this possiblility. I have a lot of mixed emotions about this but don't really feel like writing them out at this time. Other than feeding he is still our happy boy that brings us so much joy and we are so thankful for everyday with him. I just can't believe my baby is four years old. I love him now but I was really hoping he would stay about 2 or 3 forever. Time flies.

Wednesday, September 30, 2009

New family members

It has been a little while and we have had some news to share but been slow to post. We have two foster children that have been with us for 2 weeks now. They are sisters, a three year old and a one year old. Rose and Madison. We aren't sure how long we will have them but would love to have them forever. They are the most precious girls and we are a lucky family. It has definitely been a little crazy around here- getting everyone off to school and daycare, everyone fed, backpacks packed, shoes tied and not to mention the hair done. I had no idea the first week what to do with a girls hair. I am learning and loving it. Friday night we did nails together. Too fun! Andrew has enjoyed the girls up until the last few days and now will cry when the slightest bit of attention is given to someone else. He is learning to and adjusting. He is also taking hippotherapy every Wed. and loves to ride- so much so that he fell asleep during his evaluation on the Welsh Pony. I will try to keep up a bit better with the updates but for now we are having lots of fun and adjusting to a big family. GOOD TIMES!!!

Monday, September 7, 2009

Been Awhile

It has definitely been a while since our last post. All is good in the Mounce house. A few weeks before school started Andrew got sick and was not eating or swallowing well. We got very concerned and realized how possible a feeding tube was for him. With lots of prayers and well wishes he is back to his hungry little self and could eat all day if we let him. It still takes him a while to eat everything but the appetite is there and we are soo thankful. Breatholding for him has gotten worse as he is holding his breathe for longer periods and straining while his face turns red. He hasn't passed out yet that we have noticed. It is a part of the syndrome that we have no control over and bless his little heart it has to be really hard for him to focus when he is doing this.

Here is a picture on his first day of school this year. There is a big glare but isn't he adorable?? We had a wonderful summer and got to visit some sweet friends in Kingwood. This is Andrew's buddy Lincoln that we haven't seen in several years. He was so great with Andrew and treated him like any other little boy. I still laugh when I think about him having a pillow fight with Andrew on the bed. Andrew loved it! What sweet boys!

We also got to see our Granny in Huntsville and go to church with her. After a day of driving, church and a good Chinese buffet he was pooped! Granny - we love your crayon scribbles on the chair. What beautiful artwork.

Andrew is back at school and loving it. He smiles every morning and gets super excited as I talk about seeing his friends. We had some photos done by a friend back in Dallas 2 weeks ago and I can't wait to share some of the pictures from that. He loved walking around the barn, watching the turkey and chickens and looking out at the pond. He will soon start hippotherapy lessons with a physical therapist at a place east of town once a week. This is the therapeutic horseback riding and I am sooo excited for him to get to ride. He loves animals and being outside so I think this should be right up his alley. We also have an augmentative communication evaluation this week with a speech pathologist. I really hope this goes well and I just hope that she will see what a lot of us do- that he is a smart boy and that he is in there. He understands so much lately and it is exciting to see him learn new things every day.
As for our quest to adopt a child- we were unable to adopt Felix the boy we had mentioned previously. He is an adorable little boy that was placed with another family and we are thankful that he now has a home. We were one of four families interested in him and after the waiting are thankful that he just has a family. We were called this week about a 19 month old girl east of town that needs a foster to adopt placement and her caseworkers are reviewing our file with many others to determine the right family. We are not really anxious about it and don't know what to feel. I feel like our family is red flagged because we have a child with special needs and Felt and I realize that if we never get a placement that we are ok. We would not trade this life or our Drew for anything. We have learned more from our sweet boy than we could ever have imagined and we know true love because of him.

Wednesday, August 12, 2009

Anxiety and a Little Depression

We have been dealing with a little of both of anxiety and depression lately. Last week Andrew woke up every morning screaming and whining and stayed frustrated and anxious all day throughout therapy sessions. It was very difficult for the therapists to work with him and everyone was wondering what was going on. The routine was the same and we were doing everything we could to keep him calm and happy but we couldn't let him watch the Mickey Mouse Club House all day or let him listen to the same CD over and over- which let to some major meltdowns. It would start at 5 in morning when I would wake up and hear him whining and screaming. Wow that tested our patience and thank goodness for a great support team of attendants and therapists. The anxiety which disrupted any good work in therapy was finally resolved Friday morning when he woke up and was quietly cooing in his bed. I was soo relieved and my happy boy was back.
He had a great weekend going to a birthday party for one of my patients. I should have taken pictures because he had so much fun with the inflatables and me bouncing him. My back is killing me now but is was worth it to truck him up an inflatable slide and slide him down while he laughed. What we will do for a smile! He loves being around other children and watching them play. His Nonnie and Dandy came to visit and Nonnie watched him Saturday night so his dad and I could catch a movie. Thanks Nonnie you are the best!
Sat and Sun is when I noticed some new things with him and then the depression or should I say sadness hit me. He first displayed breathholding at 2 and 1/2 years and now this past weekend started holding his breath till his face turned red and almost passes out. I had read about this and was even told that this could occur by his neurologist, but seeing it first hand scares you to death. He gets lightheaded and dizzy and then it happens again and again. And nothing stops it and there is nothing to treat it and I have been told to just prepare for him to pass out and come to breathing normal again. It isn't a behavior it is just part of Rett Syndrome and I hate it. His hand movements changed again this weekend and although he continues to clap and wring his hands he now pulls them to his face in a praying position and hunches his back over like an old man. This morning he started shuffeling his feet while staying in one position and just last month started some shaky and jerky movements with his head. AAHHHH. Last night I was just filled with sadness. Sad that this syndrome is taking over his body and will continue to do so and sadness that it limits him in so many ways. We continue on this journey and make the best of what life has given him and us but there will always be sadness on some level and there will always be times when we will greive or are depressed about it.
School will be here soon and I am a little anxious about sending him without a 1:1 aide considering all that is going on with him. We had two falls yesterday. The first he hit his mouth on the kitchen countertop and the second he fell backwards and hit his head on the floor. What a rough day he had. On a funny note when he holds his breath, face gets red and veins are popping out of his neck, he gets very lightheaded and will sometimes laugh while I am panicking. What a stinker!