Brielle has been sick for the past 4 weeks. She had an ear infection, sinus infection (both for 4 weeks straight) Pneumonia for a week and now RSV, as well as Tayvah. Brielle was on 3 different antibiotics and it would not clear the ear infection what so ever. We finally said enough was enough after she was telling me her ears hurt (This little girl clothes lined her forehead on her dads truck tailgate, had a HUGE goose egg on her head and never ONCE cried) So for her to tell me something hurts, it hurts. The doctor approved her for the Rocephin injection and it cleared it up overnight! She went from crying as soon as she woke up "Mama I sick" "Mama I hurt" and laying on the couch not moving to a spunky sassy 2 year old the following day! We tossed around the idea of tubes because this is pretty common for Brielle. It takes her a long time to get over the simplest illness and ear infections last atleast 3 weeks if not more. We decided that her next infection if she cant shake it we will go thru with the tubes. I know its the simplest procedure, but I just dont want to put her thru anything else, but in the same sense I dont want to make her go thru with a 3 week ear infection!
During this whole month of illness, therapy and botox have been haulted. She got botox RIGHT before she got sick. So we feel it did not do its job. Partly because she already dislikes therapy with a passion lately, and when she is sick the simplest little touch can send her thru the roof. My Mother in law stopped in while she was having physical therapy and got to see how she fights. I could tell she never expected it from her :) She is a STRONG willed little girl. And if she doesnt want to stretch she will not stretch. She puts up the biggest fight and I have to constantly brib her with gum, suckers, stickers, etc. I cant wait til its spring out and we can go outside and have a different setting for therapy. I think she is overly bored! I can tell that she is having big time cabin fever. She tests every button I have left in my body daily. Hitting her sister and both of us, throwing everything, dumping her plate etc. Normal 2 year old behavior but up a notch.
Brielle new fad is skyping! She LOVES to skype! She walks around with the Nabi2 and asks to skype with papa, johanna, and grandma. Its cute until noones available then the tantrums come.
Brielle is still at a measely 22 pounds. Shes been stuck at 22 pounds since about 18 months. She is now 33. We are going to be doing a bunch of tests at her 3 year check up (thyroid, pituitary gland, bone age density etc) Im not really sure what to make of it. I dont mind that shes little, but WHY. Why isnt she gaining anything? Is is simply because she has cerebral palsy and it takes her little body twice as much energy just to walk and do the normal things? Okay, Ill accept that. But we just dont know. My doctor is stumpfed and wants to make sure we do all the tests that could be possibly harmful if left untreated and if they all come back normal, Great. Atleast we did what is needed to make sure everything is okay and she is just a small micropreemie with CP.
Tayvah....She is a motor maniac. She is rolling everywhere, every direction, to get into as much trouble as she can! you cant take your eyes off of her for a split second because she is across the room before you know it. She pulls herself up onto all 4s and rocks and wants to crawl! She wants to go so bad! She gets the one leg going but doesnt know what to do with her hands so she face plants. She is starting to sit unassisted too. Last week I started baby led weaning. She is very interested in grabbing any food we have so I thought lets try it and she is doing pretty good with it! She loves to mash the green beans and sit in her high chair like a big girl. She loves her jumperoo and when we say "Jump Monkey" She gets a HUGE smile on her face and goes crazy. Its so cute! She also giggles quite a bit too. She loves to watch brielle and smiles and laughs at her alot.
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Tuesday, March 12, 2013
Thursday, February 21, 2013
Schools coming....
Brielle has been fighting a cold for the past 2.5 weeks. I had her in the doctor last Monday and he did a chest Xray just because Brielle is Brielle and things can change so fast on her. That they can! He sent us on our way with a "Just a virus" and come back in a week if not better. As usual, we were back in a week this last Monday. This time, the Virus turned into an ear infection, sinus infection and a "mucousy sounding spot in her right lung thats not YET pneumonia." She was put on Augmentin, Zyrtec, Flonaise, and Albuterol every 2-4 hours as needed. This child HATES taking medicine with a passion!! Who can blame her! But oye! It is a fight to say the least! Tuesday she woke up and she was retracting so bad and wheezing so hard I could hear her in the other room! I gave her 2 puffs of albuterol and a rescue dose 15 minutes later which did nothing. After an hour she was still retracting and her therapist showed up. I expressed my concern to Lisa and she said she could see her retracting thru her shirt and up into her throat it was that bad. Lisa thought she looked the worst shes seen in the past 2.5 years we have known each other and was "hospital bound". So I called the doctor and spoke to a nurse who read Dr Krainiks notes and said he put her on the Augmentin assuming that spot would turn into pneumonia. Because thats how Brielle is! Fine one day, horrible the next! She said that is sounds like it definately turned into pneumonia and if it is, even if we brought her back in all they would do is an xray to confirm and keep her on the same meds. So thats what we have been battling for the past 2 weeks! And the last 4-5 days Tayvah has had a runny icky nose and fighting taking her bottles. I can tell she doesnt feel good either. Shes been a crab apple and just wants to sleep ALOT more than her norm.
Brielles biggest accomplishment in the last week....I had the foot stool up on the couch, she has been obsessed with sitting on it for some reason lately. She grab on and was attempting to bring her leg up. It took her a few tries and I kept encouraging her to O try again, Keep it up, Raise it alittle higher and all the sudden she was UP! I made a big stink about and danced around and shouted "YOU DID IT!!!!" And she was so proud of herself she was shaking her little fists in the air yelling "I DID IT!" And then she had to do it 2 more times! This seems like such a small feat for most, but she has needed help getting up into any chair, bed, highchair, couch, etc her whole life and to do it all by herself was a huge deal to her! Granted it helped that she had the space between two peices of the stool to anchor her hands and pull, but hey she did it and was so proud! She has been little miss independent lately, which is great, but also means more meltdowns when she cant do something she knows she should or can do!
Today I met with 5 people to talk about Brielles option after her 3rd birthday. 3!!! Where in the world has the past 3 years gone!! When Brielle turns 3 years old in June, she looses all her benefits thru the birth to 3 program that she is in now. So I need to find outside therapys to work with her. I was a nervous wreck and still not sure how I feel about sending her to school. I feel alittle bit better after meeting with them and asking a million questions, but Im so not ready. They could tell and told me I have til Fall to transition myself. I felt alittle dumb to have tears in my eyes, but everything she has gone thru and still going thru, I just feel the need to shelter her and protect her from the mean world. never going to happen, I know, but its just my quirky thinking. We got to meet her teacher, Mrs Krissy, the board member Mrs Franklin and then Brielles current PT Lisa, OT Mary Ann, and current teacher Jenni. The 3 therapists described what they are doing for Brielle currently and what they feel she will need help with in school. Some of the concerns we have that she should be doing as an average 2 year old is Taking on and off her coat by herself. undressing herself, potty training, stairs, climbing on furniture etc. I asked her teacher what types of things will they be doing with her since she will be getting Physical, Occupational, and speech in school. She said they she would be put in a preschool like setting. There they will be coloring and doing art projects, singing and dancing, reading, small field trips etc. She will even have a little backpack of her own :) Everything like a normal school aged child would do but she will just be getting help with it. She said that she will ride the short bus and they come right to my house in my driveway and I put her on the bus in her carseat and I get her off. Her teacher and the aide will get her on and off at the school. She will go 2 days a week for 2 1/2 hours. I believe deep down in my heart she will LOVE school! I will adjust. I will probably love my 3 hours off a day with Tayvah. :) Ive wanted nothing more for her to be normal and average and do what every other child is doing. This is her chance. She will do great and she will love it! And Mom will learn to love it too :)
Brielles biggest accomplishment in the last week....I had the foot stool up on the couch, she has been obsessed with sitting on it for some reason lately. She grab on and was attempting to bring her leg up. It took her a few tries and I kept encouraging her to O try again, Keep it up, Raise it alittle higher and all the sudden she was UP! I made a big stink about and danced around and shouted "YOU DID IT!!!!" And she was so proud of herself she was shaking her little fists in the air yelling "I DID IT!" And then she had to do it 2 more times! This seems like such a small feat for most, but she has needed help getting up into any chair, bed, highchair, couch, etc her whole life and to do it all by herself was a huge deal to her! Granted it helped that she had the space between two peices of the stool to anchor her hands and pull, but hey she did it and was so proud! She has been little miss independent lately, which is great, but also means more meltdowns when she cant do something she knows she should or can do!
Today I met with 5 people to talk about Brielles option after her 3rd birthday. 3!!! Where in the world has the past 3 years gone!! When Brielle turns 3 years old in June, she looses all her benefits thru the birth to 3 program that she is in now. So I need to find outside therapys to work with her. I was a nervous wreck and still not sure how I feel about sending her to school. I feel alittle bit better after meeting with them and asking a million questions, but Im so not ready. They could tell and told me I have til Fall to transition myself. I felt alittle dumb to have tears in my eyes, but everything she has gone thru and still going thru, I just feel the need to shelter her and protect her from the mean world. never going to happen, I know, but its just my quirky thinking. We got to meet her teacher, Mrs Krissy, the board member Mrs Franklin and then Brielles current PT Lisa, OT Mary Ann, and current teacher Jenni. The 3 therapists described what they are doing for Brielle currently and what they feel she will need help with in school. Some of the concerns we have that she should be doing as an average 2 year old is Taking on and off her coat by herself. undressing herself, potty training, stairs, climbing on furniture etc. I asked her teacher what types of things will they be doing with her since she will be getting Physical, Occupational, and speech in school. She said they she would be put in a preschool like setting. There they will be coloring and doing art projects, singing and dancing, reading, small field trips etc. She will even have a little backpack of her own :) Everything like a normal school aged child would do but she will just be getting help with it. She said that she will ride the short bus and they come right to my house in my driveway and I put her on the bus in her carseat and I get her off. Her teacher and the aide will get her on and off at the school. She will go 2 days a week for 2 1/2 hours. I believe deep down in my heart she will LOVE school! I will adjust. I will probably love my 3 hours off a day with Tayvah. :) Ive wanted nothing more for her to be normal and average and do what every other child is doing. This is her chance. She will do great and she will love it! And Mom will learn to love it too :)
Monday, February 4, 2013
Reflux meds work!
Tayvah is better! I ended up talking to the girls pediatricians wife (I see her at the NICU I volunteer at) and talked to her about what was going on and she said that her youngest had reflux and it was bad! So I took her in almost 2 weeks ago and she was put on Zantec. It is helping some. She still gets in her crabby spurts tho. Not as many, but some. I have noticed that her crabby spurts come when she is over stiumlated. Ex. Basketball games (Which Brielle LOVES to go watch her auntie Kaila kick butt at!), family partys that are noisey, or just an over all busy day that she is in and out. She is VERY much a baby that likes to just lay and play with her toys and not be handled alot. Total opposite of Brielle. She loves her jumperoo, she loves to lay on her belly and reach for toys and roll over and just lay and coo. She is much like Brielle in the sense that she does not want to be rocked to sleep. And when shes ready for bed, she lets you know! And you better just put her in the bottom right hand corner with her head tight up against her bumper with her face facing the wall and her thumb in her mouth. Thats how she sleeps each and every night. Both of my kids are very much Crib sleepers. They dont sleep well anywhere else. Its healthier to have that (so the experts say) but it can be a pain when you are out and about and they are tired.
Today is Tayvahs 4 month check up! Holy man! Where did the time go??? I feel like I had her a month ago! She is growing so fast I can hardly believe it. 4 months until Brielle is 3! Oye!
Brielle is weighing in at 22lbs 4oz and 34". Tayvah is weighing at 13lbs 11oz and 17 1/2". Grow babies grow! On second thought, SLOW DOWN!!
I just signed the papers to enroll Brielle into the early childhood program at Hortonville School. When Brielle turns 3 in 4 short months, she looses all her therapists. I will have to bring her to the Depere clinic she gets botox at currently. But early childhood will also benefit her if she qualifies. I hope she does. But I cant believe I am even to the stage of signing her up for school. I feel like we just signed her discharge papers from the NICU to bring her home. Now Im signing papers to send her off to school. Time needs to stand still for awhile.
Brielles botox isnt working as well this time. Her therapist is entertaining the idea of Phenol instead. Phenol is a deeper injection right to the site of the problem. She will be put to sleep for that procedure. NOT a fan of phenol! I will have to ask Dr Morberg her opinions on it and go from there. I just dont know. I had to go in to a "interview" to talk to a neurologist to see if they consider Brielle disabled or not to keep getting medicaid. While answering all the questions and describing the things she cant do that a normal 2 year old does was somewhat depressing. She cant climb stairs or do down them unless she does them like a 1 year old. She cant climb up on the couch or a chair. She is still in a crib with no end in sight as of now. She cant climb up a stool on her own to sit on the big girl potty. She cant run. She cant walk on an uneven surface without falling. She cant take off her own clothes (mainly her shirt and socks). She cant open a door. She cant push herself with her feet on a riding toy or wheel the pedals of a bike. I know to most they sound like petty things. But in the real world she is pretty behind. Some 1 1/2 year olds are doing more than she does. My 2 year old neice does more than she does right now. Im worried about Tayvah passing her up and doing what she cant and then it kicks into Brielle why she cant do those things. Im hoping it has the other effect and she learns from Tayvah and benefits from it. When we went to a family birthday party a few months ago, it was in a big hall and there were all sorts of kids around Brielles age there running around. They would go up and down the 3 steps and chase each other. Brielle was far behind and still going down the first 2 steps by the time the other kids younger than her were back and passing her up again. It was so hard to see. It pulls at my heart in the worst way. My sister and I just talked about this the other day as she works with a lady who takes care of her older grandson with CP. He falls in school and he can not play sports which he wants to because of the disability. My sister said that she can not imagine how I feel as a mom watching my daughter struggle with average kid activities. It is hard. It breaks my heart. But to me she is perfect. I just dont want her to ever think she cant do something. Right now she is so full of life and keeps on trucking with that beautiful smile on her face. Her smile is so contagious! I just hope it continues and she knows that if she sets her mind to it, she can and will accomplish anything!! Because she has already accomplished so much at 2 1/2 years old! She has impacted and given so many people hope at her young age.
Today is Tayvahs 4 month check up! Holy man! Where did the time go??? I feel like I had her a month ago! She is growing so fast I can hardly believe it. 4 months until Brielle is 3! Oye!
Brielle is weighing in at 22lbs 4oz and 34". Tayvah is weighing at 13lbs 11oz and 17 1/2". Grow babies grow! On second thought, SLOW DOWN!!
I just signed the papers to enroll Brielle into the early childhood program at Hortonville School. When Brielle turns 3 in 4 short months, she looses all her therapists. I will have to bring her to the Depere clinic she gets botox at currently. But early childhood will also benefit her if she qualifies. I hope she does. But I cant believe I am even to the stage of signing her up for school. I feel like we just signed her discharge papers from the NICU to bring her home. Now Im signing papers to send her off to school. Time needs to stand still for awhile.
Brielles botox isnt working as well this time. Her therapist is entertaining the idea of Phenol instead. Phenol is a deeper injection right to the site of the problem. She will be put to sleep for that procedure. NOT a fan of phenol! I will have to ask Dr Morberg her opinions on it and go from there. I just dont know. I had to go in to a "interview" to talk to a neurologist to see if they consider Brielle disabled or not to keep getting medicaid. While answering all the questions and describing the things she cant do that a normal 2 year old does was somewhat depressing. She cant climb stairs or do down them unless she does them like a 1 year old. She cant climb up on the couch or a chair. She is still in a crib with no end in sight as of now. She cant climb up a stool on her own to sit on the big girl potty. She cant run. She cant walk on an uneven surface without falling. She cant take off her own clothes (mainly her shirt and socks). She cant open a door. She cant push herself with her feet on a riding toy or wheel the pedals of a bike. I know to most they sound like petty things. But in the real world she is pretty behind. Some 1 1/2 year olds are doing more than she does. My 2 year old neice does more than she does right now. Im worried about Tayvah passing her up and doing what she cant and then it kicks into Brielle why she cant do those things. Im hoping it has the other effect and she learns from Tayvah and benefits from it. When we went to a family birthday party a few months ago, it was in a big hall and there were all sorts of kids around Brielles age there running around. They would go up and down the 3 steps and chase each other. Brielle was far behind and still going down the first 2 steps by the time the other kids younger than her were back and passing her up again. It was so hard to see. It pulls at my heart in the worst way. My sister and I just talked about this the other day as she works with a lady who takes care of her older grandson with CP. He falls in school and he can not play sports which he wants to because of the disability. My sister said that she can not imagine how I feel as a mom watching my daughter struggle with average kid activities. It is hard. It breaks my heart. But to me she is perfect. I just dont want her to ever think she cant do something. Right now she is so full of life and keeps on trucking with that beautiful smile on her face. Her smile is so contagious! I just hope it continues and she knows that if she sets her mind to it, she can and will accomplish anything!! Because she has already accomplished so much at 2 1/2 years old! She has impacted and given so many people hope at her young age.
Tuesday, January 15, 2013
Update!
I am a horrible blogger lately! Partly, because I do not get on my laptop a lot and usually check in on my phone. Anywho, Things have been chaotic but enjoyable here. Tayvahs torticolis has seemed to subside. She is still being watched but we are just keeping up with the stretching and encouraging her to look to the right as much as we can. She rolled over one day shy of 3 months on New years day! She scoots forwards and backwards. Her therapist evaluated her at a 6 month level as far as rolling, head control, and scooting. This child wants to GO! She wants to sit up all the time and never lay down. She loves her jumperoo and bumbo to sit up and watch her crazy sister run around She is so alert! The past 2 months have been hell to say the least with Tayvahs colic. Especially the last month, it has gotten almost unbearable. It comes out of nowhere and there is nothing that works to stop her. Friday was a breaking point and I cried with her. She gets so upset and stiffens out and just a squealing cry like she is in pain. A totally different cry from a normal Im hungry cry. SO I asked some other moms their opinions and what to do! I tried gas drops, gripe water, apple juice, colic formula, you name it! I was desperate and would try anything at this point! 2 ideas I got, were to switch her to nutramigen formula and chiropractor. We switched her on sat night late and could tell a difference right!Nutramigen is a meat based formula and not the normal milk based formula. It was SO nice to have my happy little girl back! Monday I took her to the chiropractor! Holy man! Why did I wait so long?!?!? She was out quite a bit in her back and neck. She goes back Wednesday and I am taking Brielle this time too. This Chiro, Jim VerVoort, does adjustments on 0-4 year olds for free. He is the nicest man!! He spent 45 minutes with her and explained a lot to us and was very caring! Tayvah has only had 1 colic crying spell since Saturday! I can.not.belive.it!! For those that don’t fully understand, this child was having a good 7-8 colic crys a DAY. They would last 10-20 minutes and she would just CRY and SCREAM to the point she couldn’t catch her breath. She would turn bright red and stiffen her body out there was nothing to settle her down. My child was in pain and I did not know what to do! I told Josh that I think colic is harder to deal with than the 98 days in the NICU. In the NICU I could step away. I can leave. In the NICU I had others helping to fix the situation. It was ME trying to figure out what to change and how to fix my unhappy baby who appeared to be in so much pain. It was seriously daunting. I felt horrible that I did not know what to do to make her better. And now that she is happy and not crying and not appearing to be in pain, I am on cloud nine! The smiles have been endless. I don’t have to work to get them anymore. I just look at her now and she glows! Brielle learned how to turn the TV volume up to drown out Tayvahs screams. I asked Brielle at the Chiro if her sister screams a lot. She said “YA” lol. Poor kid. Im just so glad she is happy finally! And I hope things with her continue the way the last 2 days have been!!
Brielle got another round of botox today. We were talking 2 weeks ago about how we were not sure if she really needed botox. She looked pretty good. But the last week she has gone down hill big time. The simple things like putting her foot up on the step to climb the stairs, she could not do. She was walking on her tip toes 90% of the time and just could not get her foot flat due to her ankles being so incredibly tight. She has started grabbing her upper legs again so Im thinking the muscle spasms are back and I am thinking about restarting baclofen. But maybe the botox will be enough to loosen her enough where they will go away. Maybe the chiropractor tomorrow will be able to help with that as well. Only time will tell. It is nice tho that she is getting to the age where she can tell me. Ive been trying to teach her what hurt means so she can tell me. Shes getting it down pretty good.
Brielle is the best big sister a mom could ask for. She LOVES to help get her nuk, “cover up” her sister, get bottles, throw diapers away, and her all time fav hold her amongst much more! I love to watch her interact with Tayvah. It is so adorable and brings a smile to my face every single time. Her favorite shows are Full house, max and ruby, dora, and SID the science kid. She can count to 12, says ABCDE and can say some with a song playing. She loves to watch her favorite shows and sing along with them. Brielle and her cousin Johanna start Ballet classes tomorrow night. I think she will love it, but we will see!! She loves to play hide and seek! She is getting pretty clever with her hiding places lately! The other day she was under the dog beds, under the bedspread that she pulled on the floor a bit, and the best was when she went in the closet. She sits so still for a 2 year old and she is so quiet. The closet, I didnt see her go in there (and didnt even know we were playing!) and she scared the crap out of me because I couldnt find her!! She laughs and laughs and hits her leg because she thinks she is just so funny! Which she truly is pretty funny :) She loves to watch her auntie Kaila kick butt in basketball! However she dislikes the pep band with a passion! (loud noise). She loves to take her doll and feed her and burp her etc, everything that I do with Tayvah. She play Tea party and is really getting her “pretend” stage going. Not a day goes by that I just stare at her and marvel in how far this little has come! I still volunteer at the NICU on Monday night. There are some little ones up there right now and to see the parents going thru what Josh and I went thru 2.5 years ago makes me really count my blessings. Talking to those parents really makes me remember why I am up there. Just to show them how far Brielle has come and what she has overcome and to see the hope on their faces is so rewarding! That is why I do it. I would have LOVED to have someone to talk to. Someone to offer me that glimmer of hope. Im blessed that I get to do that for others, and come home to the miracles in my life.
Brielle got another round of botox today. We were talking 2 weeks ago about how we were not sure if she really needed botox. She looked pretty good. But the last week she has gone down hill big time. The simple things like putting her foot up on the step to climb the stairs, she could not do. She was walking on her tip toes 90% of the time and just could not get her foot flat due to her ankles being so incredibly tight. She has started grabbing her upper legs again so Im thinking the muscle spasms are back and I am thinking about restarting baclofen. But maybe the botox will be enough to loosen her enough where they will go away. Maybe the chiropractor tomorrow will be able to help with that as well. Only time will tell. It is nice tho that she is getting to the age where she can tell me. Ive been trying to teach her what hurt means so she can tell me. Shes getting it down pretty good.
Brielle is the best big sister a mom could ask for. She LOVES to help get her nuk, “cover up” her sister, get bottles, throw diapers away, and her all time fav hold her amongst much more! I love to watch her interact with Tayvah. It is so adorable and brings a smile to my face every single time. Her favorite shows are Full house, max and ruby, dora, and SID the science kid. She can count to 12, says ABCDE and can say some with a song playing. She loves to watch her favorite shows and sing along with them. Brielle and her cousin Johanna start Ballet classes tomorrow night. I think she will love it, but we will see!! She loves to play hide and seek! She is getting pretty clever with her hiding places lately! The other day she was under the dog beds, under the bedspread that she pulled on the floor a bit, and the best was when she went in the closet. She sits so still for a 2 year old and she is so quiet. The closet, I didnt see her go in there (and didnt even know we were playing!) and she scared the crap out of me because I couldnt find her!! She laughs and laughs and hits her leg because she thinks she is just so funny! Which she truly is pretty funny :) She loves to watch her auntie Kaila kick butt in basketball! However she dislikes the pep band with a passion! (loud noise). She loves to take her doll and feed her and burp her etc, everything that I do with Tayvah. She play Tea party and is really getting her “pretend” stage going. Not a day goes by that I just stare at her and marvel in how far this little has come! I still volunteer at the NICU on Monday night. There are some little ones up there right now and to see the parents going thru what Josh and I went thru 2.5 years ago makes me really count my blessings. Talking to those parents really makes me remember why I am up there. Just to show them how far Brielle has come and what she has overcome and to see the hope on their faces is so rewarding! That is why I do it. I would have LOVED to have someone to talk to. Someone to offer me that glimmer of hope. Im blessed that I get to do that for others, and come home to the miracles in my life.
Tuesday, December 4, 2012
Whats Normal?
In the past 2 1/2 years, I found myself wondering what a "normal" pregnancy would be like. To show up to my baby shower with a big belly, a baby inside. Not having my shower after baby was here for 2 months, because we didnt know if she would survive. I wondered what it would be like to have the "normal" doctor appointments to a pediatrician at 2 weeks, 2 months, 4 months and so on. Instead we have a team of 10 different doctors and therapists and specialists looking after one child. I wondered what it would be like to wear maternity clothes. To take a baby HOME with YOU from the hospital. I got that chance 2 months ago. It was perfect! She is healthy! She is 11lbs 11oz (57%). She came home with us. She has has no problems! Then out of the blue, Josh questioned her always looking to the left. I hadnt seen it. Perhaps Im too caught up in the everyday tasks I have. But I told him he was crazy. I also feel I did not want to pick her apart as we have had to do to Brielle. I just wanted her to be "Normal". Josh questioned Brielles physical therapist, Lisa, at Brielles therapy christmas party on Saturday. Lisa said she would evaluate Tayvah when she came today. Lisa came today, and evaluated Tayvah and she has torticolis. It is where the head is tipped to one side and the chin to the other. I asked her when this usually shows its true colors and she said usually around 2 months. She was 2 months on Sunday.
I know that torticolis is not a HUGE deal. But, as another special needs mom said to me, Just because it is "fixable" does not mean I dont have the right to be sad, angry, mad, hurt etc. I guess to ME "Normal" is the average baby who breezes thru with no interventions. Both my kids will need therapy now. Thats tough on my heart. I feel like we cant win. Why us? Again? Really!?!? I LOVE our physical therapist, so Im confident that everything will be okay. She could tell my heart was being ripped when she told me. I could tell she didnt want to tell me she would need "help." She kept saying "She will be okay." I know she will. I know it will. It just sucks. You never want your child to be sick, let alone have any type of condition. My neice had tort so I am confident that it will be fine. It will just take some extra work on our part. Stretching is a regular part of my vocabulary. Now it will be in Tayvahs as well.
While at Tayvahs 2 month appt yesterday, her Dr approached me again about growth hormones for Brielle. He said he was watching her in the hallway and looking at how small she is for 30 months. She is only 21 pounds at 2 1/2. He would like to do a thyroid test on her, an insulin test and a bone age test on her. He said he wants to look into if her pituitary gland is functioning. This is also tugging at my heart big time. While I DO NOT want to put her thru all this testing, as she has been thru more than I have at 28, I feel it is necessary to make sure her thyroid and pituitary gland are okay. If something is off and we decide to go for the hormones, they may help her motor skills with the Cerebral Palsy, but not always. Or do we just say screw it and let her be 5 foot 100lbs her whole life????? We have some decisions to look into in the next 6 months.
I know that torticolis is not a HUGE deal. But, as another special needs mom said to me, Just because it is "fixable" does not mean I dont have the right to be sad, angry, mad, hurt etc. I guess to ME "Normal" is the average baby who breezes thru with no interventions. Both my kids will need therapy now. Thats tough on my heart. I feel like we cant win. Why us? Again? Really!?!? I LOVE our physical therapist, so Im confident that everything will be okay. She could tell my heart was being ripped when she told me. I could tell she didnt want to tell me she would need "help." She kept saying "She will be okay." I know she will. I know it will. It just sucks. You never want your child to be sick, let alone have any type of condition. My neice had tort so I am confident that it will be fine. It will just take some extra work on our part. Stretching is a regular part of my vocabulary. Now it will be in Tayvahs as well.
While at Tayvahs 2 month appt yesterday, her Dr approached me again about growth hormones for Brielle. He said he was watching her in the hallway and looking at how small she is for 30 months. She is only 21 pounds at 2 1/2. He would like to do a thyroid test on her, an insulin test and a bone age test on her. He said he wants to look into if her pituitary gland is functioning. This is also tugging at my heart big time. While I DO NOT want to put her thru all this testing, as she has been thru more than I have at 28, I feel it is necessary to make sure her thyroid and pituitary gland are okay. If something is off and we decide to go for the hormones, they may help her motor skills with the Cerebral Palsy, but not always. Or do we just say screw it and let her be 5 foot 100lbs her whole life????? We have some decisions to look into in the next 6 months.
Wednesday, November 28, 2012
All Smiles in the Peterson house!
Brielle had her monthly nutritionist appointment Tuesday and weighs in at 21 lbs 14 oz and 33" tall. Fully clothed :) She will be 30 months on Dec 1st. Since the scale was here, I threw Tayvah on the scale. My little pork chop weighs 11 lbs 14 oz! These two kiddos are total night and day! At one year of age, Brielle was only 17 lbs. At the rate Tayvah is going she will weigh more than Brielle by age one. :) She has gained 3 lbs 3 oz in less than 2 months! I love it!
Tayvah just started her real smiles about 2 weeks ago! I love them all! Brielle loves to see her smile and it melts my heart when Brielle copys me to try to get her to smile! Its adorable!
Brielle is amazing! She is so smart and so funny and so naughty all at the same time!!
Tayvah just started her real smiles about 2 weeks ago! I love them all! Brielle loves to see her smile and it melts my heart when Brielle copys me to try to get her to smile! Its adorable!
Brielle is amazing! She is so smart and so funny and so naughty all at the same time!!
- She knows quite a few colors so far, her favorite being pink and purple! She knows orange, blue and green too.
- She LOVES to since BINGO, but just sings the "HAD A DOG" part. Its quite hilarious!
- I was watching her on the video monitor after she walked upstairs and wanted to take a nap, and then decided she would rather play. She looked in the corners of her crib and said "Wheres mom? In the corner? NOPE." and did it about 3 times. It was so funny! She got the "in the corner" because my mom was helping me paint and she asked where grandma was when she was behind the stove. I told her she was naughty so she was in the corner (which we dont put Brielle in the corner, but she associated it with naughty lol).
- Her favorite game now is Hide and seek. She laughs so hard she can barely stand up.
- She also is obsessed with coloring! She colors 80% of her day! And she always wants someone to color with her.
- Her favorite show (well one) is Full house. She loves her 'Show'. She gets soo excited when it comes on and screams and dances! She will actually sit still and watch most of it in silence. Most shows she wont sit still and watch over a few minutes.
- She has been showing signs of wanting to potty train so we have been! Ive tried the pull ups and she does not care to wear them. She would rather go bare butt or big girl undies. Tonight she went over 2 1/2 hours without an accident. Pretty good considering I have not been hard core about training.
Sunday, October 28, 2012
Adjusting well as a family of four!
Our family of four with our fith watching over us!! I never understood how much love you can have for something so little and new! In my previous posts, I was worried about not having enough love to go around. My fears have been put to rest. However, I have been struggling with time management. I suspect Tayvah has some colic and acid reflux going on. Ive been trying to manage it with gripe water, gas drops, and sitting her upright for atleast 30 min after a feed and feeding her upright instead of laying down. While this process takes alot more time, I think its helping manage it. But it takes away alot from Brielle. She has not figured out to "share" her mama time. She LOVES her sister and wants to hold her every waking minute. Which I love that she loves to hold her, but it just isnt realistic. We've noticed that her feelings get hurt now. A characteristic she has never shown before baby came. She will pout and even shed tears which yanks at my heart. I know its part of life, but its still hard to see. She also wants to cuddle alot more. Which I gladly jump at every opportunity! We try to include her in everything we are doing with Tayvah that she can help with. All in all, the change has taken very well and we are pretty well adjusted. I just need to sort out a few things, like learning how to go to the store and juggle two kids. Ive only ventured out by myself once so far in 3 weeks. Brielle usually minds pretty well, but she gets in her 2 year old moods for sure! I also need to figure out the feeding schedules. Brielle always wants to eat when Tayvah eats so I am feeding Tayvah when Brielle eats, then clean up, then play and I usually dont eat until Josh comes home. While this is helping me loose all the weight and Im actually 4 lbs lighter Pre pregnancy, its not the healthy way. I never thought it would be so easy to "forget" to eat.
Therapy has picked back up because of the botox. When she gets botox her therapies go to 2x a week instead of once a week. This coming week we have appointments everyday and 2 on Thursday. We stay busy, thats for sure! Thursdays therapy went pretty well! We are seeing some good signs of botox. But Brielle gets bored with the therapy we do. We've been trying to take her to the playgrounds and funset etc to work her, but now with winter coming it is hard to use the playground. Time to put my thinking cap on and come up with new ways to stretch her and get the most out of botox. So far, we've been using Tayvah as a decoy. I will lure Brielle to sit on her ball and I will hold Tayvah on her lap while Lisa stretches her ankles, legs, and core muscles. Or we will coax her to do her stepping stones with the reward of holding Tayvah at the finish line. Poor Tayvah hehe but it works! And Tayvah tolerates it extremely well!
Therapy has picked back up because of the botox. When she gets botox her therapies go to 2x a week instead of once a week. This coming week we have appointments everyday and 2 on Thursday. We stay busy, thats for sure! Thursdays therapy went pretty well! We are seeing some good signs of botox. But Brielle gets bored with the therapy we do. We've been trying to take her to the playgrounds and funset etc to work her, but now with winter coming it is hard to use the playground. Time to put my thinking cap on and come up with new ways to stretch her and get the most out of botox. So far, we've been using Tayvah as a decoy. I will lure Brielle to sit on her ball and I will hold Tayvah on her lap while Lisa stretches her ankles, legs, and core muscles. Or we will coax her to do her stepping stones with the reward of holding Tayvah at the finish line. Poor Tayvah hehe but it works! And Tayvah tolerates it extremely well!
Thursday, October 4, 2012
Tayvah Rose
Our little Tayvah Rose Peterson arrived on Tuesday October 2, 2012. She made her debut at 10:16am and weighed in at 8lbs 9oz and 21" long. She has a full head of dark dark hair. She is perfect. We are so in love! This experience is so different for Josh and I. It was not rushed. It was relaxed (well as much as it could be). We had to be at the hospital 2 hours before my C Section. I had a nurse, Kari, who I have kept in touch with since my stay with the twins. That right there probably made me chill out, because I "knew" her. We could chit chat small talk and I didnt have to just have the surgery on my brain. We arrived at the hospital and put our things in our room and then went to the OR to meet Kari to get prepped for the surgery. I do not remember much of the twins emergency C Section at all. I was prepped in the same room that Josh had to wait in for the twins by himself and wonder what was going on in the double doors only feet from him. Brought him back to alot of memories. Once I was prepped I walked into the OR room where I got my epidural. OUCH!! It was crazy pain! The anesthiologist was a very nice guy tho and did whatever he could to make me comfortable. Once I started feeling sick to my stomach he would put something in my IV and the feeling went away immediately. Once I was completely numb they let Josh come in. I was a nervous wreck before he got there and I couldnt stop shaking. Once Josh came in he plaed his hand on mine and sat down by my head and we just made small talk to keep us both calm and try not to think about it too much. The Anesthsialogist was watching and giving Josh and I a play by play of what was happening since we could not see anything other than the blue curtain. Kari was also telling us when her feet came out, then her butt, and then we heard the cry. It was so amazing to hear your newborn child scream and cry! It was months before we were able to hear Brielle cry. Josh then got to go over to the warmer and cut her cord. We got to watch them clean her up and weigh her etc etc. After she was born and cleaned off a bit she was given to Josh. He brought her over to me right away and held her by my head so I could see her. She fell asleep and was so content. It was such a great feeling! After I was taken care of they got me in my bed and I got to hold her on the way to our room. In the room we took her foot prints and Josh gave her a bath. She got to stay in our room with us the whole time. I could not believe that she was ours. Everytime I looked at her I had to tell myself she was really ours. She was my baby. It was amazing to get to see and feel all those things that first time moms get to experience that we missed out on with the twins. Our birth experiences were night and day this time vs last time. Each was unique and I embrace them both.
Brielle is beyond excited about her sister. She can not stop smiling when she sees her. She loves to hold her and kiss her. She always has to know where she is at all times. She loves to help feed her as well. She is really going to be a good big sister and helper. When she leaves me at the hospital for the night she is so funny! We do the whole kiss hug etc and say I love you. She walks out of my room and pokes her head back in and says "Bye" I tell her bye back and she walks out. Only to poke her head back in and say I LOVE YOU. I say it back. She will do this several times until dad makes her leave. Then she yells it down the hallway until I cant hear her anymore. It is so funny and so cute! She melts my heart!
Brielle is beyond excited about her sister. She can not stop smiling when she sees her. She loves to hold her and kiss her. She always has to know where she is at all times. She loves to help feed her as well. She is really going to be a good big sister and helper. When she leaves me at the hospital for the night she is so funny! We do the whole kiss hug etc and say I love you. She walks out of my room and pokes her head back in and says "Bye" I tell her bye back and she walks out. Only to poke her head back in and say I LOVE YOU. I say it back. She will do this several times until dad makes her leave. Then she yells it down the hallway until I cant hear her anymore. It is so funny and so cute! She melts my heart!
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