sick?

It's so hard with children to know when they are not feeling well, but this is especially true of a special needs child. Charles and I have little clues that tell us and a good one is that Briar is not regurgitating as much. This is always bitter sweet for us. To see our baby not constantly in pain from throwing up is wonderful, but it usually means that she is getting some type of illness.

We went to the pediatrician on Friday and she politely gave me trouble for not administering Briar's phenobarb on a regular basis in the evening. Typically we give it to her in the morning and after a long day at daycare and then coming home to eat, Briar is asleep before bed time routines. I shouldn't make excuses, but she doesn't live our life and she doesn't always get it. I do what is best for my children always, but I really hate meds... and Briar REALLY hates meds (too thin!)

Anyways, Briar had a great week at day care. Her front 7th tooth finally came in!!!! But she has a big one coming through and she seems to get very agitated in the evening. We just rub it for her or offer her something cold (which she hates)

I have really been working hard on a few signs with her this week. She has her own "eat" sign because she puts her fist to her mouth, but we are also working on "sleep" and "milk". I think I will start "mom" this week and Charles try teaching her "dad"

I am so tried, I have been working a lot lately to get some money for Charles so he can have a great time on his trip in December!! Have a good night everyone XOXOX Ashley

PS Oh yeah, Ella's first day of school is Monday!! She is in full days all week. Her classroom is downstairs from me, but still close enough for me to walk by every so often HAHAHA Oh we are all so excited, Briar even picked out a nice dress for her to wear on her first day.

Reflux

Dear GERD,
I hate you! Please go away and never return!!

Cookies

Just using the title to entice you to read my blog :) Anyways, I am just waiting for the butter to melt a little in order to make Briar's favourite cookies!! Okay I LOVE them too (Thanks Michael Smith). So far today we walked to the library, met Charles at the laundromat and had a nice lunch. We also attempted to nap (I attempted to teach Briar the sign for sleep), but it was unsuccessful. She is probably cozily sleeping next to Charles right now!

We have had a great week. Loraine is Briar's new enhanced staff at daycare because Laura had to return to the before and after club. Loraine is great, she is very easy going and loves to play. Typically a few times a week, Briar is covered in dirt or paint or something hehehe. Briar had Osk and Amanda Dunn (her new resource teacher) visit her at daycare on Thursday. Osk called to say goodbye and had some great things to say about Briar's progress!! I will truly miss her. She was the first person directly involved in Briar's therapy. She always had positive things to say and she always gave me encouragement when I was feeling down. I'm trying not to cry right now, but it's hard!

Briar is really wanting to sit up now, like all the time! It makes it very difficult to feed her. We used to recline her but she fights it and because she can't quite keep her head up, the food goes everywhere but her mouth :) Any suggestions.... scratch that, no complaining here!!!

Now that I think of it, I have been meaning to ask, I hope this doesn't sound too negative... Does/Did anyone have a child they thought wasn't going to progress any further? I take Briar as she is and I really don't care if she develops any further, but it always seems like every 1P36 child can do more than her. She is still working on head control at 19 months. She can't really use her hands other than to scratch her face off. I definitely know when she is unhappy, but other than that she hasn't changed since she was born. I know it's a slow process, but did anyone feel this way and get totally surprised? I'm just trying to get a handle on what to expect... and that in itself is the problem, every child is different.

I think Briar will be starting PT again, Sue is done holidays and left a message to start as soon as we can. I am just trying to figure out school stuff and then I promise to return her call :)

I am interested in signing Briar up for a class or something. Any ideas? We did swimming and I can handle a lot but the teacher had the nerve to tell me she thought Briar was wanting to go home and giving her sad looks, or that if we couldn't do it, that was okay!! I told that B**** that it was good for Briar and that she loves water. Moving on, I also struggle in "average classes" because everyone either stares or asks me questions (I don't like telling complete strangers my life story so they feel better about themselves) We live in a small city and it's difficult to find other people with similar experiences. We have heard their is another family with a 1P36 child, but genetics can't give us any information! I am saving money to go to the conference next year. It looks so fun! But Charles can't go, because summer is the busiest time of the year for him, so I need a partner, any takers?

Ashley

Good things always come

So right now we are in what I call a "good" phase, meaning very little regurge!! :)
It makes me second guess wanting the GJ Tube, yet when we are in a "bad" phase, it is really bad and I cry in my van a lot!! Anyways, so we are waiting to hear from surgery with a consult for a GJ tube. Day care is reporting that she is eating A LOT more than she was (which is awesome) but I feel like I have to make a big decision that changes the rest of Briar's life. Like I said, when it's bad, I know with 100% certainty that we want the tube, but when it's good....

More good news, Briar started at her new day care in July and has a 1:1 staff, Laura. Things are going WONDERFULLY!!! I am seeing a huge change in Briar's expressions (lots of little side smiles, letting me know when she has had enough :) She seems to be growing up in front of me and I don't know where the time has gone. I wonder if she needs a sibling.... HAHAHA!!! Kidding!!!! Not for quite a while.

About a month ago we finally got her Kimba and we LOVE IT!!!! Seriously, what were we doing before this stroller!! It actually makes life easier because there are no more weird looks or funny faces when the age questions comes. People just know and I am more than happy to fill them in :)

Briar and Ella are my everything. I knew I wanted to be a mom since I was like 6 (thanks to having a niece to be my baby, Jess!!) but I never would have guessed I would get to be a super mom!!! Having an exceptional child has made me a confident and secure person. It has also made me a lot more open minded (I'm pretty open minded!!!) and it gave me a chance to look at the world a little differently.

So.... I intend to love and be loved, read great books, have a glass of wine everyday, love love love my children and leave our earth a little better than when I came to it. PEACE

Oh how things never change

The title may be deceiving, but what I mean is the problems seem never ending. However, this is not a sad blog, it is one of motivation.

So, on Monday May 17, 2010, we headed at 6:30 am I may add to Sick Kids in Toronto. We went to the GI/Nutrition clinic. We didn't even have to wait that long ;) The nutritionist and doctor agreed that Briar is not gaining weight, in fact she is losing weight especially in the last 4-5 months. I was aware of this because her clothes fit better now than in January. Anyways, she is currently 75 cms long and 8.51 kilos. The nutritionist said that is about 2 1/2 feet, 18 1/2 lbs.

So the doctor asked us a lot of questions about Briar and her eating habits (throwing up 10-20 times a day, eating 3 bottles and some pureed foods, medication and digestion) After gasping at the amount of times she threw up (Charles and I laughed although it's not funny) he had three recommendations;

1. New medication - It is similar to what she has been on but more powerful. It is a special order medication and they have to get permission to prescribe it. They also have to locate a pharmacy that can make it or ship it to us. Because of the side effects of this medication, Briar had to have an ECG of her heart and blood work. We are just waiting for the results. If all goes well, the doctor thought once started, we would know within a week if it is working or not.

2. A Nissan Fundoplication - sound familiar? Briar has already had this surgery and the doctor said that although it is an option, that in children with neurological disorders, it usually isn't successful. So he doesn't recommend this one

3. A GJ Tube - This is a tube that is placed through the stomach into the small intestine (jijunum) and food is fed through this tube. Because the small intestine is much smaller than the stomach, the process of feeding will take much longer. But when I questioned the doctor about feeding her orally and then possibly just tube feeding at night, he said this is an option. I am excited about her possibly not regurgitating as much, but really undecided about how this will affect her life in the long run. We have a lot of thinking to do, but as always Briar is the best that she can be and we love her more every second!!

So I will update about the stroller in the next post!!

Anything you can do, I can do better, I can do anything better than you! (No you can't, yes I can)

Well next week is a cRaZy week LOL I guess I should mention that they are all crazy with Briar, but this one is especially.

Monday - GI at sick kids (third times the charm?)
Tuesday - Recreation and Seating clinic (YAH!!! Been waiting so long for a great stroller to support Briar)
Wednesday - Off work because E and B don't have day care (Good luck in Germany Cait!! We will miss you so much!! )
Thursday - Another CHAP meet and greet (where we will hopefully find a respite worker)
Friday - Wedding rehearsal for Cole and Alicia
Saturday - My little brother gets married!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With regards to B, things have been going well. She is adjusting beautifully at Shelly's. She has started homo milk and a sippy cup twice a day. She is really getting good at holding her head up. She is taking a little break from physiotherapy. Mostly so I can work full time for a few weeks, but also because it's nice to have a break :) She is sleeping well and not up coughing all night. We almost made it through the spring without antibiotics too... oh well, she is feeling better now.

My friend Carol and I were just talking last week about the "first" time someone would ask me about "what does Briar have?" Well it happened last weekend. Helen and I were out with our girls, and the owner at Playstreet (who was so nice) asked Helen how old Briar was. Carol and I thought this would give her away hehehehe, anyways when Helen told him, he approached me and asked if Briar liked balloons. I said, yes... shiny ones :) He then asked me a few questions and we talked about Briar . It was such a nice first experience with "why is your child different?" but funny how we observe those around us. He went on to talk about his daughter going deaf at 4 years old and how she now has a cochlear implant. I was amazed at his openness, he has obviously been doing this for longer than me. I, however, am learning. I'll post with a lesson when I learn it LOL

Did I mention my brother is getting married next week?? This is crazy and amazing itself. We waited a long time for him to propose, but I always said "My sister in law, Alicia...." HAHA Anyways, I will post a few pics after the wedding. This is so surreal to me, but I am ready.... I hope you two are as well :)

I am tired

Hi Everyone,
Well as we look around, it's easy to see that winter has left us. My chives are growing and the birds are singing.

My little B had been doing all that she can to hold that huge (and by huge I mean small) head of hers up. We are really working on chewing. This involves me putting food such as shredded cheese, bread or cooked pasta in her mouth and manually moving her jaw up and down. It seems to be helping. We are also trying to transition to a sippy cup. This is not easy as the flow is fast and B likes things a certain way (don't we all?) We try it every so often and hopefully she starts preferring that to a bottle. Today we see Dr. M and I am really hoping she says, "No more formula for that chubby babe" hahaha I can hope. Briar was sick a few weeks ago and we were in hospital for a four days. It was weird, we knew we weren't going to be staying, yet the same feelings of anxiety and anger were still there. I felt snappy with people although I'm sure they didn't notice. We had a male nurse and while I was casually talking to him he said, "I know, isn't that retarded?" I felt sad for him.

We have started the process of getting Briar a special needs stroller. This can be used for so many things such as a high chair. We have done the home assessment and now we need to go to a seating clinic. I am very excited but also sad, we were hoping by now that Briar would be able to support herself. Her muscles seem so strong to me, sometimes I think she could almost sit on her own because of her back muscles. Anyways, Briar's reflux is getting worse again. It was completely gone when she had pneumonia and now it has returned full force. Lately, I have felt like crying when it happens. I used to think, oh we'll just wipe it up and be on our way. I'm not sure when that changed, but I do feel stressed now about it. We went to walmart today and she threw up 5 times in the store, we were there for maybe 15 minutes. The car ride home was another 2 times and a couple more once we got home and moved her into the living room. I hate reflux more than anything else because she is in pain having solid food come up and out. I watch it rise to her throat and we attempt to have her swallow it, but lately she has been coughing and then it all comes out. The frustration is also there because she has to wear a bib all day or change her clothes all the time.

I am currently trying to access community living services. I am playing phone tag with the woman and secretly laughing about how she will react to a 1 year old seeking these services, but Osk said that Briar is someone who will need them so why not start that relationship now? I happen to agree. It feels so nice to talk to people who enjoy your child even if she doesn't smile or talk back.

We went to the sugar bush this weekend and a nice old lady said "Oh, look at her eye lashes. They are beautiful, hello darling!! Oh, you aren't very happy are you?" How do I respond to that, as a person who is now accustomed to dealing with this situation I laugh it off and say, "No, she's just tired" but as a mom, I am tired of people seeing her as sad or unhappy, that makes me feel terrible, like maybe she won't ever be happy. The swimming instructor told me she thought Briar looked sad and was trying to tell me "Get me out of here mom" I don't blame anyone, I would probably respond the same way. I am just tired....

Back to the grind

Well today is the day I never saw coming, I`m back to work. I knew it would happen, but all of the sudden it was Sunday and that meant the next day was Monday!! So last night was spent in tears. Ella of course the independent go getter was like,"Mom, its okay, tomorrow I'll go to Shelly's and then when you are done work, you can pick me up" Unfortunately I didn't share her enthusiasm.

It`s been awhile since our last post. Briar is so close to being able to hold her head up on her own. She has a new motivation, I'm just not sure what it is. All of the sudden over Christmas break, she decided to start looking around and focusing on people, she seems more alert and aware of her surroundings. Its incredible!!! Family has been an amazing support over the holidays. Everyone wants to hold Briar and help with her many needs. Oh tumble form, what would we do without you!!!

With encouragement I did cut her bangs. I have to be honest, it was hard. One of the only normal things about Briar was her long beautiful hair (okay it could also be seen as freakishly long but...) So I cut it, cause I don`t care if people look at her funny or gasp when I tell them her age.

Charles and I did get our genetics report back and as expected, Jeanette said we have completely normal profiles. Not that that matters, but it allows us to relax when baby making resumes LOL (not for a long time Carol!!!)

My friend Jes is about to have her baby in February... sorry Jes, just a guess :) HAHAHA probably not too funny to you but I am not pregnant so I can laugh. I am so excited because then all my girlies will be mamas, and amazing ones at that. So I think that is all for now. I will update soon, as we have physio today and I think Sue will see a huge improvement

XOXOX Ashley

Briar is NAPPING!!

So this is totally a pointless post, but I am over the moon because Briar is napping as we speak. Since the geneticist mentioned that she thinks Briar could still be seizing, we have witnessed two seizures. This would explain her funky sleep schedule and some of her developmental delays... so great news, we see her pediatrician and doctor both this week!!! The seizures were not as severe as before, more muscle contractions but not the flailing part. She did seem less aware of her surrounding though (back track: When Briar was seven weeks old, she had a Nissan Fundoplication and literally the next morning the nurse asked me if she ever made any jolts or moved a lot in the night. I was like, this hypotonia child? NO! So, we went on to witness 8 seizures over the next 3 days before being discharged. Briar stopped seizing the day before discharge and no one at the hospital seemed all that concerned. After being home for two and a half weeks, she started seizing again and this time it was more frequently, with the seizures lasting longer and longer. So back we were in the hospital and I don't have to tell you how trying this was).

Briar has what are called "infantile spasms", basically for Briar, her arms, hands, legs and feet flail out and the muscles in her body contract. You can feel them tightening. She is very aware of everyone and usually keeps eye contact with me when I hold her. I like to hold her arms and legs tight to try to stop the contracting... this occasionally works or at least I think it does. Anyways, the original point is that on Monday when she had a seizure, she was not able to look at me like she usually did, so I will just monitor the seizures and keep track of the frequency, duration and what she is doing.

But on a positive note.... her tooth is partially through!!! I am feeling like a first time mom here. I think it's because it's a MILESTONE, maybe I'll just throw that word out there. It's not like holding her head up or sitting, but it's something and I'll take it. As for the napping part, it's over... I can here her upstairs! Oh well, just another day.

Peace, Ashley

Is this a tooth?

Is this a tooth? Please tell me, cause you all know I am going crazy!! Ella had her first tooth at 5 months old, Briar is officially 9 months old today! It's the right tooth on the top, just a little white coming through near the bottom. It's hard to see because of the flash... have no fear followers, I will update with new pictures as the mighty white emerges!!!

What do you think???

Anyways, we had physio today and it was great. Sue was happy with her muscles and they weren't too tight, even for someone who isn't mobile. We played on the ball and Briar stayed awake the entire time! Holy Mackerel!

I have been spending a lot of time reading other parents blogs for 1P36 and although inspiring, it brings up a lot of memories that I would rather forget. It also makes me want to skip ahead to the future (but I also don't want to miss anything!!) I am feeling rather down lately. Charles is gone to hockey all the time (he is in Ottawa as we speak and hopefully had a visit with the Boisvert's!!!) I think it could be the "returning to work and not having day care" thing or just seeing no progress with Briar. She is wonderful and amazing, but some times I want a baby that can coo, crawl, smile and return my love. I never know if she loves me back. So I am left wondering if she is happy, or will she ever be? I love her so much and that will never change, but seeing babies her age is really difficult. Of course I would never say that out loud.

Carol and I went to Chapter's a while ago and we saw a nine month old baby girl, standing, making sounds, playing... I wanted to cry. My daughter should be doing those things. I guess I need to mourn the loss of a lot of things for her. I never imagined having to do that, but it is a reality.

Anyways, I need that little cry and bitch. Now I feel better, and I must go on, so I bid you adieu. XO Ashley

Yesterday

Okay, update everyone! We had a genetic clinic yesterday and met with Dr. T. She is wonderful and I can't spell her name, sorry. She thought Briar could still be seizing, as her sleep patterns are pretty messed up and she often stares off into space. She taught us that, "Open hands are happy hands." meaning we should be holding her hands open or putting something in them ALL the time. OT has already suggested this as they don't want her hands to become "sensitized" to having things in her hands. P.S. She HATES having things in her hands, she can actually drop things in her sleep. LOL Anyways, Dr. T was very positive and used the old, "Wait and see." attitude we hear so frequently. I talked about the articles we read versus parents blogs about their children. She encouraged us to "hook up" with other parents. It sounds a little sexual for me, but I guess.... ;) She also discussed some of Briar's "differences" as she doesn't like saying abnormalities. She noticed first of all, that Briar is a clone of Charles LOL. I thought that was pretty cute. She pointed out Briar's uvula (the ball in the back of your throat...why she noticed this, not sure) and that it is very small, and very much needed for pronunciation. She we will continue to work on signing to babe! She noticed Briar's posteriorly rotated ears, her deep set eyes, pointed chin, straight eyebrows, short fifth finger (which we all LOVE!!!) her pinkie only has one line instead of two like everyone else. She did comment that no one would look twice at B and probably wouldn't know she has these differences. She did say most people would notice her "floppiness" due to the hypotonia. We had a great chat and she gave us a new article to read.

In the afternoon, Osk came to visit. We won't be seeing her for a while because the health unit is focusing on H1N1 and nothing else!! She couldn't believe Briar's neck and head control (hehehe it's funny cause it's not that great, but to us it's a ten fold improvement, so I guess it is great!!) Anyways, she said I need to be "in Briar's face/personal space" and make her move even when she dazes off (which Osk does not think is a seizure) So all in all a good day. Especially when B fell asleep on me right before bed... so cute... and then woke up at 3:30 am with reflux... great LOL

So we have physio today and I will update to let everyone know how it goes! Thanks Carol for taking my child, carving pumpkins and making forts!!

Also, should we get the flu vaccine or the H1N1 vaccine? Let me know what your opinion is, I need help!!!

Cloth Dipes

We've officially made the switch to cloth! Yah for us. On the upside, because Briar doesn't eat a lot, Briar doesn't pee a lot either, so they are never super soaked. We chose Gdiapers and they work great (insert promo here). They come with compostable, throw outable and flushable inserts (not for us, but cool either way!) We chose to use cloth inserts and I am LOVING it. You can buy cute little pink ones with frills on the bum. We are driving to Etobicoke next week to pick some up we bought on Kijiji and I am thinking of making a stop in TO or somewhere to buy some more! I'll post of picture of B wearing them. Oh they make me happy :)

Ashley

Appointments, do you have some on a weekly basis? LOL

I am going crazy with appointments. First of all we are now at 5ccc on a weekly basis, which is great. We are being followed by genetics, and have our "big" appointment coming up on the 22nd. That's when Briar gets to meet with a geneticist that might actually be able to tell us some specific things about Briar, not 1P36 kids in general. She has a 6 Mb deletion which puts her kind of in the middle. I'm interested in finding out a little about her future. I know they won't be able to tell me exactly what to expect, but it's better than the wait and see we get from most doctors! :)

We have a cardiology appointment when she is three (Ha! That's what they told us before she needed to be on oxygen for six weeks and have a PDA Ligation.) to see if her ASD and VSD's are closed.

We have our usual every three weeks appointment at the Pediatrician. B is also seeing our family doctor on a more relaxed basis.

We are going to Neurology in January. This one has really pissed me off because she was supposed to go back in August, but the earliest appointment was January!!! I know other children need to see the neurologist but with a growing brain and baby, I was hoping to be in when they said I should... AUGUST!!!

Osk is supposed to schedule an appointment every month, but I think she may have forgotten, I should call her.

Briar was in for some thyroid and pheno levels again. It's funny cause the MDS people are always like, "Oh a baby, I hope she's not having the blood taken!" I feel like saying, she has had blood taken well over 100 times in her life. It was on a daily basis while in the hospital, sometimes more if they didn't get enough!! But I know they are just caring ladies. Gee, I get annoyed easily...

On a positive note that has nothing to do with Briar but will help us all in the long run... We got our refinancing approved so we can pay off my student loan finally! As well as get a new furnace for our OLD house and some other things we desperately need. It will also allow me some time off in the summer with Briar!! I can't wait and I am thinking of it already. I am also pleasantly surprised that I am excited to go back to work. It was very hard to leave Ella the first time, but I think the prospect of having the summer off (therefore only working Jan-June) is very exciting. I also know Briar will be with someone who loves her dearly (Auntie Care!!!) until she gets into a centre (unless Care wants to have her full time? ;) LOL

PS The pic of Ella was her trying a hot pepper after I told her not too!

Anyways, good bye for now! Love Mama Powers

Life is precious, but not to be lived that way.

Just listening to B breathing (loudly) in the other room makes me smile. I am thinking about her birth and those first few months. Every thing seemed so surreal and never ending, yet here we are.... This world of ours truly is amazing, no matter what you believe.

Being in a hospital for months at a time can make you go crazy, so to cope Briar and I would do things like not leave her room because she had rota virus twice, wear gowns and masks, wash our hands obsessively LOL see where I'm going with this... At least I can laugh now.

Anyways, here are some pics that make me remember the good, the bad and the ugly....


XO Ashley

Babies.

Okay, so everyone I think I have ever known is having a baby now, and it's really making me think about my family. I have always wanted six kids, but after careful consideration i.e. MONEY, we have decided that four is likely a better fit for our family. With that said, a few people have questioned why we would choose to have more children after having Briar.... excuse me! I don't think they mean because she is soooooo fabulous (which she is) I think they are implying that after having a child born with a disability, your family must come to a halt. All I can think of is how wonderful it will be to have so many people (girls? probably) around to love and help her grow. If you are one of these people, please take offense. I would much rather that, than you continue to bother me with your "concerns". The one I get the most is, "Briar needs time with you." No shit, I don't plan on having a show entitled, "The Powers: 18 and counting". However, I do plan on having more children!! I also plan on getting another dog, but mine has arthritis... should I put these plans on hold.. I'm so confused LOL Okay so I know arthritis is not like 1P36, but I was venting....

Anyways, for now I am satisfied with my nephew Leyton on the way and a few more in the plans I think (hint, hint Snider!) but just to be clear, I definitely do not feel my family is complete, if mother nature has other plans, that is okay too.

Peace, Ashley