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

Sleep baby... nap!

Today looks horrible outside, but it's better then snow. Briar is sleeping right now which makes me very happy! We have yet to get a "routine" going. It's very hard with her, because she doesn't eat enough or sleep enough, then she crashes. We started warming her formula up again and that is helping.

Thanksgiving was great because she got to try many new food like squash, sweet potatoes, cranberry, pear, banana and potatoes. She doesn't really open her mouth, I just kind of put the spoon on her lips and she sucks it off. It's very cute.

Today, I walked in the room and Ella was reading a story and snuggling with Briar. It was so freaking cute!!!!! She is so amazing with B. Last week I asked her if Briar was the same as other babies or different. She said "the same." Then I asked her who could do more things Bennett (our 5 month old nephew) or Briar and she said, "Briar." I love this, she doesn't see the world the way I do. I wish she could stay that way. By the way, Bennett can so many things now!! He can roll over, jump in the jolly, he giggles so loudly and smiles all the time. He is such a happy boy. I love seeing his smiles since Briar's are few and far between. Bath time is when she is happiest. Some times she is crying for hours and I don't know what to do, cause nothing works, so I put her in the tub and she is so relaxed (this doesn't always work, but I still try every time). If only there was an instruction manual... oh well, I'd probably lose it anyways LOL

Well I better get organized before Ella goes to cubbies, bye!

Some like it thick

Oh medication, how I loathe and love you at the same time!

Bebo is currently on phenobarbital twice a day, it's getting very hard to give it to her as she hates thin liquids. I asked Dr. M if we could possibly (please, please, please) stop using it and see if her seizures return. Dr. M feels like we should wait a few more months.

She is also on Ranitidine four times a day, which doesn't seem to be helping (I thought that's what the fundo was for!!!) Reflux has been better since we started solids, so I tend to offer solids a lot! I've started making my own baby food, it makes me feel like I am doing something for her. I exclusively pumped for three months and that still doesn't feel like enough.

We recently started lansoyl which I was hesitant to put her on as I don't want her to depend on a laxative... but it's working. We are still using thickened formula and I mean THICK, she likes it like pancake batter. We are gradually thinning it, but once it gets to a certain point she starts refusing it. I am still on the fence about feeding her on demand. I tend to do the every 3-4 hour thing. That hardly works! I don't know what to do... any ideas??

Milestones...

Well, it is now October and I will be returning to work in a few short months (January to be exact)... and I am still waiting for that milestone. Ella was 3 weeks old when she first rolled over...okay, it was an accident, but the desire was there. Briar has yet to hold her head up on her own. We are getting very close to doing it for a few seconds. I feel like I want to have a party when she has her first milestone, but it is making me think about returning to work. I am of course returning because I will be off in the summer. I just feel like most parents would have seen ALL the major milestones in the first year... I haven't seen one. I want to be there for that one, cheering her on, clapping and screaming my head off! LOL So, what to do... we will see.

We just got her insert for her high chair, which has made a world of difference. It holds everything for her but her head, that is her job... see how much she likes it. Briar gets very frustrated when asked to work, but it also motivates her. We have now been going to PT and OT at Five Counties Children Centre (5CCC) for 2 weeks. Since going to 5CCC, we are not seeing Osk (our health unit physiotherapist) as much. She has been so amazing and I miss her. I miss a lot of people who would not have meant that much to me, had it not been for all our time spent in hospital.

I feel like I am rambling and it feels good :) Thanksgiving was great, everyone was very impressed with Briar. Especially her new found eye contact. She has been focusing slightly more and it is nice to have people recognize this. We are having some difficulties with weight gain but she is gaining slowly. I am trying to emphasize that she is gaining and not losing to her pediatrician, our amazing Dr. Moradhassel, we will see what she thinks.

Well, time to go and attempt to get another feeding in, we will see what Bebo has planned. LOL

HAPPY THANKSGIVING TO YOU AND YOURS.

Day by Day

Some days, I have to remind myself... "Today is a new day!"

My name is Ashley and I am the mother of two. I have an amazing 3 year old named Ella and a fabulous 8 month old named Briar. Briar also has 1P36 Deletion Syndrome.

I'll start from the beginning... I had a wonderful pregnancy with Briar, although she was often breech presentation, because of this, we had multiple ultrasounds and everything was fine. At 37 weeks, we went in for a version, in one of her breech stages and were amazed to watch her turn in front of our eyes!! We were truly surprised because Ella weighed in at 8 lbs 4 oz and Briar was already estimated at 7 lbs. We waited 41 long weeks and still no VBAC, no Briar. We had a scheduled c-section on January 23, 2009. At 1:02 pm, Briar Powers entered to world weighing 6 lbs 14 oz, she was 20 1/2 inches, she screamed like bloody murder and then became very quiet. I was told she required some oxygen and was taken to the Special Care Nursery where we would spend the next few weeks, asking many questions, but getting few answers. The nurse also told me that the doctor had to use the forceps, apparently, Briar attempted to turn around and go back in LOL

One day, while on a forced break from the hospital, Dr. M called me at home. I thought, "This can't be good." That is when she told me they had found 5 holes in Briar's heart. We had also been told she had a cyst on her brain.

Briar was transferred to the Children's Hospital of Eastern Ontario (CHEO). Before her second month birthday, she had a Nissan Fundoplication. Before her fourth month birthday, she had a PDA ligation. Watching my child go through surgery before two months old, was the hardest thing I had ever done. She was poked and prodded everyday with blood work, ultrasounds and x-rays. The day after her surgery, she started having seizures. I'm sure this sounds very familiar.

Dr. Judith Allenson (the geneticist at CHEO) recognized Briar's heart conditions, facial features and reflux as a sign for 1P36, although she had never had a patient with this type of deletion. The first genetic testing, showed no abnormalities. We were discharged and life went on.

At 5 months old, we received a letter from Dr. Allenson, stating "We have found a tiny missing piece in Briar's genetic code," but that we needed to make an appointment to talk about the diagnosis. I should mention that as a mother, I had already researched lots of genetic disorders and using the words from the letter, I found 1P36 on wikipedia. I saw a picture of the sweetest little girl, and immediately recognized the same lips, eyes, eyebrows and nose. I have since read everything I can get my hands on. I have met with physiotherapists, occupational therapists, genetic counselors (my husband and I are being tested next week) and many other specialists. But most of all, I have met the most special girl in the world, Briar! I hope this blog allows you to experience everything our family does on this amazing journey... here we go!