Josh is going to be a daddy in October, and I think its mine!!!
Josh and I are excited to share that we are expecting number 3 on October 8, 2012! Yes, number 3!I have two children. Ayden and Brielle! A few people have said, “congrats on number 2!”No, it’s number 3! Yes, physically it’s two, but in my heart I have 3 children. One living, One in heaven, and one in-utero! It makes me kind of sad to think that Ayden may have been forgotten already. He’s been left out. One mom of an angel baby acknowledged Ayden. That meant the world!
We got to see baby on Friday. It still does not seem real. Josh and I were not “trying.” I honestly didn’t know if we’d be able to get pregnant unassisted. Guess I found that answer out! It is a welcomed blessing tho! I am 13 weeks today. I decided to wait this “long” to say anything because 1. I couldn’t believe I was pregnant! 2. The risk of miscarriage was on my mind heavily! 3. I’m scared to freaking death! But now that cats out of the bag, I hope everyone will shoot us prayers for a full term healthy baby!
I am going to the same OB I had with the twins. She knows my history, which was a plus for me. She knows my fears! The first appt was at 9 weeks. 4 tubes of blood, pap, cultures, heart beat check…..Which she couldn’t find, but wasn’t freaking since I know that’s early to find it. Second appt was just for a heart beat check at 12w4d and again, no heartbeat. The whole Doppler and jelly on my stomach brought back so much anxiety from being on bed rest with the twins. When I was on bed rest, they would do heartbeat checks 4 times a day ish. So the month I was in the hospital I had approximately 96 doppler checks on both babies. Pretty routine as well as temp checks and blood pressure checks. So the second that jelly hit my belly and the first swoosh of the Doppler, my anxiety hit. My doctor knew it. She kept asking if I was ok and reassuring me that the babies little and it takes awhile to find the heart if at all. So after about 3 minutes of trying the second appointment she said “come on, let’s go to show you everything’s okay on ultrasound.” OK whole new wave of emotions! Let me take you back to my bed rest days so you can fully understand why I’m having anxiety…..Heartbeat check, roughly 9am May 31. Nurse could not find Ayden’s heartbeat. She tried and tried and went to find a “senior” nurse that was really good at it. Josh, in the meantime, tried to find his son. Senior nurse came in to try and she couldn’t try. I could tell by the look on her face, but I didn’t want to give up hope yet. I didn’t lie in that bed 3 weeks 3 days and come this far to give up yet! She couldn’t find him either, anxiety sets in. She called the on call doctor who brought in a bed side ultrasound, which is not as good quality as the ultrasound tech would have, but I would take anything. He couldn’t even find Ayden. He thought maybe I was going into labor, even tho I didn’t feel it, and Ayden was already in the birth canal. So the ultrasound team was called. It took them a little over an hour to get there. It seemed like eternity! Once she got there, as soon as the screen popped up, I knew. No one needed to tell me. The nurse squeezed my toe and that said it all. I immediately welled up in tears. Josh tried to stay strong, but he reached his breaking point too. My rock crumbled. The sight of Brielle was on the left side of the screen, swimming around like crazy. Ayden on the left. No heart beat. No movement. My last image of my little boy. Dead. He had fought all he could. He got his sister to “viability.” My little boy had lost his fight. I had failed my children. NOW what? We didn’t know. We didn’t know what this now meant for Brielle. I felt there was no going on. But I still had one to fight for. She was only 1 days past “viability.” Our doctor wanted to obviously leave her in the womb as long as possible. So the plan was to monitor me and the baby to the nines! I had those dreaded straps on my belly and because Brielle was too small, a nurse pretty much sat on the bed next to me and kept moving the monitor with her because she had so much room as she was only 1 pound 6 ounces! I had temp checks every 3 hours. The criteria of taking Brielle immediately were if my Temp went up or if Brielle’s heart rate went over 170. After awhile the monitoring got more intense. My nurse, Heather, who admitted me that night my water broke, happened to be my nurse that night. I hadn’t had her much in between. June 1, I started going into labor around noon and by 6 it was unbearable. I asked Heather straight out from her experience what she thought was going to happen. She said I’d have a baby tonight. I had already signed all the consent forms etc etc. It was reality. This was REALLY happening. Brielle born at 8:52pm 1lb 6oz 12” long. Ayden born 8:52pm 1lb 4.3oz 12” long. After 98 days in the hospital my baby was home.
So as you can tell, the dopplers and the ultrasounds DEFINITELY bring back fears and anxiety. I tried so flippin hard to NOT think about the past and focus on a happy, healthy, worry free pregnancy, but that most likely won’t happen. My doctor has a very high risk cautious plan. She has me coming in at 16, 18, 20 weeks for cervical length checks. Those are done by Trans vaginal ultrasound. I will also start progesterone shots at 18-36 weeks to help stop any preterm labor. Our plan is thru 20 weeks right now as that’s as far as I made it last time. She brought up the option of going to see a high risk perinatologist. That doctor specializes in high risk woman and will do more in depth ultrasounds and scans. I was going to see one with the twins. The day before my water broke, the ultrasound showed that Brielle was growing slower than Ayden so it was a concern. I never made it to him. My OB had talked and consulted with him the whole time I was in the hospital however.
I have several near and dear friends close to my heart that are currently pregnant or have been pregnant after their loss and prematurity or pprom. Mary said to me “We are in this together.” Yes, yes we are! We are the same exact due date! Another mama, Jess, is 29 weeks. She lost a 24 weeker as well. She is expecting a boy! She is my inspiration! The power of prayer is incredible. I learned that fast with Brielle. We are going to do this! We are having a baby!
Ticker
Monday, April 2, 2012
Tuesday, March 20, 2012
Overwhlemed!
From my last post, we All knew today was coming. Im an emotional mess.
The morning went well. Put all of Brielles "gear" on (Her Spio Vest, both orthodics and secured the shoes. Jealous of the average parent that can slip on a shirt and pair of shorts and shoes on their kid and out they go. Anywho, On our way to depere (about 35 minute drive) and Brielle ripped at her orthodics/sandals the whole way and got everything off by the time we arrived. Back to square one.
Get to the office, and they try to tell me I owe them $100 blah blah blah, I fought it tooth to nail and said that because we have private insurance and she has Medicaid on top of it, medicaid picks up all co-pays. They couldnt fricken understand that! I wasnt paying them a penny. I told them to call who ever their billing lady was and figure it out and I would pop back in when my appointment was over. She then proceeds to tell me that Brielles appointment "somehow" got DROPPED so she was never in the schedule. REALLY??? I scheduled this 6 fricken months ago! So we sat there for 40 minutes before they got all this crap figured out. A 21 month old, does.not. stay patient that long!!!! She came back and said they got new scheduling software so it probably got messed up that way and then billing came back and said we didnt owe anything, Just like I tried to tell them!! So frustrating when a business cant get their shit straight!
So now we get in the room, Brielle was being a complete sassy pants, as she had no attention span left because we just had to sit in the waiting room for 40 minutes. So she was literally beating on the doctors computer, pulling her diaper bag apart and flinging everything across the room, into everything she wasnt supposed to be and not doing anything she was supposed to be doing! Good thing Dr. Morberg was tolerant because by this point my patience were non existent! And Im forever grateful for her Physical Therapist, Lisa, Who is technically out on medical leave for surgery, that she came to the appointment with me.
Some of my "concerns" or frustrations more than anything, are her constant falling as I mentioned before. In the last few weeks she falls more than ever! She is getting mad and I dont blame her one bit. She fell 4 times in the first minute we were there, which then accompanied her fit. But I was happy that happened because they could see it. Lisa explained that because her hamstrings are firing so fast, she doesnt have enough time to recover from the fall when she tries to stand up and go at it again, which in turn makes her just keep falling. Makes sense. Dr M agreed without hesitation she was tight after she attempted to stretch her and needed botox, possibly phenol. She wants to start with botox for 3 months, if it works do one more round of botox and then go to phenol every 6 months if the first two rounds work for her. Typically by 2 weeks we will know the results of the botox. Some children even show great signs of improvement after 2-3 days. The majority of it will be in her left hamstring. And then some in her right hamstring. The botox can be done right in the clinic. The Phenol she will need to be put to sleep for everytime. Not excited!! This is my life. Its becoming more and more real. But I know that it needs to happen for her to lead a "normal" life! I will do anything for her look normal, act normal, walk normal, play normal etc. While waiting we seen a little boy, maybe 6, that has Right sided effected CP. You could see it in his step and in his arm. HAPPIEST little boy EVER! I loved it!! While it broke my heart to see the actual CP in an older child and think "Man, that COULD be us in 4 years" it melted my heart that he was so happy and loved all his therapists there and had to give them all "Five" before he left!
Sunday Brielle got really sick. Vomiting all over herself, dog, and dads truck. After I got thinking, when we got home from the retirement party (It was 78 here Sunday) and took off her spio vest she was HOT! This child was so warm and is always a hot box! She was in a crib at 3 lbs and I was told by the NICU Dr they usually dont like to crib them til around 4 lbs but her isolette wouldnt go down any further. So my assumption is she got a bit of heat stroke. She was dehydrated and didnt pee for 13 hours! I was just getting ready to call the Dr and she peed! So I brought that up and she said obviously keep the vest on as you can, but if your outside playing etc ditch it. We might try to kinesio tape her muscles that she needs help with :/ Ya blah....Or we can try to double swim suit her, as long as the suits are tight, or we can TRY to find/order a wet suit that she would wear to scub dive. Those are cooler, I guess. A few Ideas. I have quite a few suggestions thrown at me that I have to try and see whats works.
After everything, I forgot to ask about her tight wrists :/ Next time I guess.
Finally, I asked for an official diagnosis from a doctor that can put it in writing. I had asked her therapists what they "thought" she may have. I got Hemiplegic possibly going to diplegic. Well she ended up as a diplegic hypotonic Cerebral Palsy. Here are the definitions of each I found online:
Hemiplegia is a form of cerebral palsy that affects one arm and leg on the same side of the body. For most children with hemiplegia the arm is more involved than the leg and the end of the limbs have more problems. The wrist and hand have more physical problems than the shoulder, with the elbow literally somewhere in the middle. Similarly, the ankle and foot will exhibit more difficulties than the knee.
Diplegia is a form of CP primarily affecting the legs. Most children with CP will also have some problem with their arms but with Diplegia they are less involved and less severe. Most children with diplegia have spasticity, and have difficulty with balance and coordination. Delayed muscle growth and spasticity cause their leg muscles to be short, and as a result the range of motion can decrease as a child grows and the joints become stiff. The feet and ankles present more problems than the knees due to a short tight Achilles tendon, which can lead to toe walking. There is risk that the hips may become dislocated and for this reason, the child’s hips must be closely monitored.
The link for Hypotonic if you would like to read it....
http://www.cerebralpalsylawdoctor.com/cerebral-palsy/types/hypotonic/
This is the first time We've heard hypotonic for Brielle. But reading it makes perfect sense. She sits very "lazy"ish. When she sits she sits reclined and never straight up and down. Which is why she is in her spio vest.
So all in all a pretty informative appointment. April 17th is the day for botox. While I knew it was coming, Lisa warned me too, It still strikes a new cord. I thought we'd have to fight alittle harder to get the botox. I didnt think she'd suggest it within the first 5 minutes of just observing her. After she "tried" to stretch her and seen how tight she is she then said we'd try the botox twice and if it works then we will do the phenol which lasts 6 months instead of 3 months. And then to hear an official diagnosis of diplagic hypotonic CP, definately got the tears rolling. As a mother, you want the best for your child. I know I've said this over and over, but its true. When your child has a runny nose or a common cold, you wish you could take it from them and do anything to get them better. With CP, I cant. I cant do anything outside of my power to help her. And I dont feel like its enough. I dont feel like things are moving fast enough. Botox is less than a month away and I dont feel like its soon enough. She did offer to me (After I Told her ASAP!!!) that I could drive to west bend to get it, but my therapist is out on medical leave and it just didnt make sense to do it earlier than the 17th. Brielles therapy needs will be increased to twice a month to weekly visits now. I need to step up my stretching requirements and orthodics will need to be worn more often. Lets just say, this better work!! This is Brielles future we are talking! This HAS to work!!!
The morning went well. Put all of Brielles "gear" on (Her Spio Vest, both orthodics and secured the shoes. Jealous of the average parent that can slip on a shirt and pair of shorts and shoes on their kid and out they go. Anywho, On our way to depere (about 35 minute drive) and Brielle ripped at her orthodics/sandals the whole way and got everything off by the time we arrived. Back to square one.
Get to the office, and they try to tell me I owe them $100 blah blah blah, I fought it tooth to nail and said that because we have private insurance and she has Medicaid on top of it, medicaid picks up all co-pays. They couldnt fricken understand that! I wasnt paying them a penny. I told them to call who ever their billing lady was and figure it out and I would pop back in when my appointment was over. She then proceeds to tell me that Brielles appointment "somehow" got DROPPED so she was never in the schedule. REALLY??? I scheduled this 6 fricken months ago! So we sat there for 40 minutes before they got all this crap figured out. A 21 month old, does.not. stay patient that long!!!! She came back and said they got new scheduling software so it probably got messed up that way and then billing came back and said we didnt owe anything, Just like I tried to tell them!! So frustrating when a business cant get their shit straight!
So now we get in the room, Brielle was being a complete sassy pants, as she had no attention span left because we just had to sit in the waiting room for 40 minutes. So she was literally beating on the doctors computer, pulling her diaper bag apart and flinging everything across the room, into everything she wasnt supposed to be and not doing anything she was supposed to be doing! Good thing Dr. Morberg was tolerant because by this point my patience were non existent! And Im forever grateful for her Physical Therapist, Lisa, Who is technically out on medical leave for surgery, that she came to the appointment with me.
Some of my "concerns" or frustrations more than anything, are her constant falling as I mentioned before. In the last few weeks she falls more than ever! She is getting mad and I dont blame her one bit. She fell 4 times in the first minute we were there, which then accompanied her fit. But I was happy that happened because they could see it. Lisa explained that because her hamstrings are firing so fast, she doesnt have enough time to recover from the fall when she tries to stand up and go at it again, which in turn makes her just keep falling. Makes sense. Dr M agreed without hesitation she was tight after she attempted to stretch her and needed botox, possibly phenol. She wants to start with botox for 3 months, if it works do one more round of botox and then go to phenol every 6 months if the first two rounds work for her. Typically by 2 weeks we will know the results of the botox. Some children even show great signs of improvement after 2-3 days. The majority of it will be in her left hamstring. And then some in her right hamstring. The botox can be done right in the clinic. The Phenol she will need to be put to sleep for everytime. Not excited!! This is my life. Its becoming more and more real. But I know that it needs to happen for her to lead a "normal" life! I will do anything for her look normal, act normal, walk normal, play normal etc. While waiting we seen a little boy, maybe 6, that has Right sided effected CP. You could see it in his step and in his arm. HAPPIEST little boy EVER! I loved it!! While it broke my heart to see the actual CP in an older child and think "Man, that COULD be us in 4 years" it melted my heart that he was so happy and loved all his therapists there and had to give them all "Five" before he left!
Sunday Brielle got really sick. Vomiting all over herself, dog, and dads truck. After I got thinking, when we got home from the retirement party (It was 78 here Sunday) and took off her spio vest she was HOT! This child was so warm and is always a hot box! She was in a crib at 3 lbs and I was told by the NICU Dr they usually dont like to crib them til around 4 lbs but her isolette wouldnt go down any further. So my assumption is she got a bit of heat stroke. She was dehydrated and didnt pee for 13 hours! I was just getting ready to call the Dr and she peed! So I brought that up and she said obviously keep the vest on as you can, but if your outside playing etc ditch it. We might try to kinesio tape her muscles that she needs help with :/ Ya blah....Or we can try to double swim suit her, as long as the suits are tight, or we can TRY to find/order a wet suit that she would wear to scub dive. Those are cooler, I guess. A few Ideas. I have quite a few suggestions thrown at me that I have to try and see whats works.
After everything, I forgot to ask about her tight wrists :/ Next time I guess.
Finally, I asked for an official diagnosis from a doctor that can put it in writing. I had asked her therapists what they "thought" she may have. I got Hemiplegic possibly going to diplegic. Well she ended up as a diplegic hypotonic Cerebral Palsy. Here are the definitions of each I found online:
Hemiplegia is a form of cerebral palsy that affects one arm and leg on the same side of the body. For most children with hemiplegia the arm is more involved than the leg and the end of the limbs have more problems. The wrist and hand have more physical problems than the shoulder, with the elbow literally somewhere in the middle. Similarly, the ankle and foot will exhibit more difficulties than the knee.
Diplegia is a form of CP primarily affecting the legs. Most children with CP will also have some problem with their arms but with Diplegia they are less involved and less severe. Most children with diplegia have spasticity, and have difficulty with balance and coordination. Delayed muscle growth and spasticity cause their leg muscles to be short, and as a result the range of motion can decrease as a child grows and the joints become stiff. The feet and ankles present more problems than the knees due to a short tight Achilles tendon, which can lead to toe walking. There is risk that the hips may become dislocated and for this reason, the child’s hips must be closely monitored.
The link for Hypotonic if you would like to read it....
http://www.cerebralpalsylawdoctor.com/cerebral-palsy/types/hypotonic/
This is the first time We've heard hypotonic for Brielle. But reading it makes perfect sense. She sits very "lazy"ish. When she sits she sits reclined and never straight up and down. Which is why she is in her spio vest.
So all in all a pretty informative appointment. April 17th is the day for botox. While I knew it was coming, Lisa warned me too, It still strikes a new cord. I thought we'd have to fight alittle harder to get the botox. I didnt think she'd suggest it within the first 5 minutes of just observing her. After she "tried" to stretch her and seen how tight she is she then said we'd try the botox twice and if it works then we will do the phenol which lasts 6 months instead of 3 months. And then to hear an official diagnosis of diplagic hypotonic CP, definately got the tears rolling. As a mother, you want the best for your child. I know I've said this over and over, but its true. When your child has a runny nose or a common cold, you wish you could take it from them and do anything to get them better. With CP, I cant. I cant do anything outside of my power to help her. And I dont feel like its enough. I dont feel like things are moving fast enough. Botox is less than a month away and I dont feel like its soon enough. She did offer to me (After I Told her ASAP!!!) that I could drive to west bend to get it, but my therapist is out on medical leave and it just didnt make sense to do it earlier than the 17th. Brielles therapy needs will be increased to twice a month to weekly visits now. I need to step up my stretching requirements and orthodics will need to be worn more often. Lets just say, this better work!! This is Brielles future we are talking! This HAS to work!!!
Thursday, March 15, 2012
This ones for Auntie Em........
My sister informed that once again, Its been soooo long! Im becoming a bad blogger!! Little peanut is keeping us busy! As well as this 70 degree weather in MARCH! Love love love!!
Good day for a blog. Since the last few days Ive been feeling defeated. Tuesday, we have our 6 month appointment with Brielle pediatric rehab and medicine Dr. At this appointment we are going to question botox. Brielles physical therapist, Lisa, who I absolutely adore and trust has brought it up and after I researched it to death, I feel it is a good thing to discuss and possibly go thru with. I have a whole page of questions and concerns. Side effects, how often she will need, will she need to be casted, What if it doesnt work?? Another concern I have is her wrists. Brielle can not turn her hand over to have her palm up. This has been an on going issue for awhile. I took a break from it and recently revisited my concern and Lisa agreed with me that she is tight! UGH! It feels like she is getting tighter and tighter monthly. Its gut wrenching to watch. Her step is getting higher to the point that if shes been walking for awhile or too fast she will almost hop on her left foot. Lisa calls is a "gallop." She walks worse when she has her orthodics on. While I understand that her orthodics are NOT to help her walk BETTER, they are to help straighten out her ankles that turn inwards, Its hard to see. I dont feel they are helping and I will be bringing it up. The next concern is how clumsy she has gotten. She falls ALOT, orthodics or not. Lisa mentioned to me a few months ago, that we needed to keep her loose (FAIL) and we need to keep her confident (FAIL). She has full cognitive skills of a 2 year old. She has an attitude. And she WILL tell you if she is not doing something or if she is going to do something come hell or high water, this girl WILL do it! So we need to keep her spirits up because she knows that she can walk and next she will want to run. If she cant she is going to become frustrated and it isnt going to be pretty. Well we've hit that bump. It happened. She has been falling alot in the last week and she throws a fit each and everytime. I try to be up beat and "O Boom! Youre fine!! stand up! Come on! Lets go!" But shes feeling defeated as well. Shes frustrated. She had enough. I feel her pain. Im really hoping to get answers on Tuesday. I feel like we've hit a rock with her. Shes getting tighter as the months go on and she WILL NOT let me stretch her for anything! Shes too little to understand that she NEEDS to stretch. Shes too little to reason with. Next year, she will understand but that doesnt do us any good today. Getting her to stretch is pure hell. And Im as over it as she is. Shitty attitude, I know! But fighting with this child is not fun! She is a fighter! She is determined! She wont do what she doesnt want to! I keep telling myself, If she didnt have this attitude, She wouldnt be here! But geez louise girl, give your mama a break! Its okay to back off alittle!!
On a good note, Brielle is a hoot! She makes me laugh everyday, several times a day! Today in the car, she was so tired she was going "aaaaahhhhh aaahhhh" but with her eyes closed. This child protests naps daily! To get a nap in is pure hell too! :) And Ill be sure to tell this child when she is 15 and wants to sleep all day that she blew her chance when she was 2!!
Brielle has about 20 words. She says Boo, Bye, dog, please, bird, dad, drink, hi, done, get, go, down, choo choo, cracker, deer, car, pew, poop, no, yes, cheese, hmm Theres more, but Im drawing a blank. She is such a chatterbox! She will point her one finger at you and tell you a whole story. No clue what she just said, but its cute as heck!
she signs please, more, done, eat, sleep, drink, thank you. She knows her belly, head, eye, nose, and her famous stinky toes!
When asked to "pull my finger" she will make a tooting noise with her mouth. Thats been the highlight to everyone around Brielle.
She loves to go outside now that its finally nice and ride her four wheeler and she would just walk up and down the sidewalk all day long if you'd let her. She hates the swings at the park and will tolerate the slides. Otherwise, she'd rather just walk around. This child just wants to walk!! Walk from the car into the store, thru the store, and back to the car and into the house. She wants to push the cart, not ride in the cart. And she is persistant! Ask Gma Kris who met us at Gordmans in the middle of a complete meltdown because I put her in the cart! Oye! Id say her lungs are doing pretty good!! Tear ducts work as well!
We ask Brielle is she is tired and wants to go upstairs. She will either tell me no and keep playing or she will grab her beloved pink camo dog and head to the babygate. She will try to push the button to release the gate and then she will climb the set of stairs and go to her crib. But then she will fight her nap. Im at a loss for that one!! Its not like I force her to go to bed. I simply ask and she leads the way and then proceeds to have a melt down. Im stumpfed!
Brielle has been pooping on the big girl potty since about Novememberish. My sister sat her daughter on the toilet whos a bit younger than Brielle. I thought hmm and tried it. She took a liking to it and its just kept going. She went in the bathroom the other night when Josh was in there putting stuff away yelling "Poop poop" Josh kept telling her to get out. I told him what she was trying to tell him so he sat her on the potty and sure enough. She is sure learning what she needs/wants to do. She brought her jacket to me the other day (as shes just in a diaper). She will go in the pantry and bring me snacks. She knows when she wants a drink. Shes definately a smart little girl. Her latest is mom reading Brown Bear Brown Bear what do you see to her 8 times a day. The only book that child will sit thru! So keep on reading!!
Ill try to be a good blogger and update after Tuesdays appointment!! :)
Good day for a blog. Since the last few days Ive been feeling defeated. Tuesday, we have our 6 month appointment with Brielle pediatric rehab and medicine Dr. At this appointment we are going to question botox. Brielles physical therapist, Lisa, who I absolutely adore and trust has brought it up and after I researched it to death, I feel it is a good thing to discuss and possibly go thru with. I have a whole page of questions and concerns. Side effects, how often she will need, will she need to be casted, What if it doesnt work?? Another concern I have is her wrists. Brielle can not turn her hand over to have her palm up. This has been an on going issue for awhile. I took a break from it and recently revisited my concern and Lisa agreed with me that she is tight! UGH! It feels like she is getting tighter and tighter monthly. Its gut wrenching to watch. Her step is getting higher to the point that if shes been walking for awhile or too fast she will almost hop on her left foot. Lisa calls is a "gallop." She walks worse when she has her orthodics on. While I understand that her orthodics are NOT to help her walk BETTER, they are to help straighten out her ankles that turn inwards, Its hard to see. I dont feel they are helping and I will be bringing it up. The next concern is how clumsy she has gotten. She falls ALOT, orthodics or not. Lisa mentioned to me a few months ago, that we needed to keep her loose (FAIL) and we need to keep her confident (FAIL). She has full cognitive skills of a 2 year old. She has an attitude. And she WILL tell you if she is not doing something or if she is going to do something come hell or high water, this girl WILL do it! So we need to keep her spirits up because she knows that she can walk and next she will want to run. If she cant she is going to become frustrated and it isnt going to be pretty. Well we've hit that bump. It happened. She has been falling alot in the last week and she throws a fit each and everytime. I try to be up beat and "O Boom! Youre fine!! stand up! Come on! Lets go!" But shes feeling defeated as well. Shes frustrated. She had enough. I feel her pain. Im really hoping to get answers on Tuesday. I feel like we've hit a rock with her. Shes getting tighter as the months go on and she WILL NOT let me stretch her for anything! Shes too little to understand that she NEEDS to stretch. Shes too little to reason with. Next year, she will understand but that doesnt do us any good today. Getting her to stretch is pure hell. And Im as over it as she is. Shitty attitude, I know! But fighting with this child is not fun! She is a fighter! She is determined! She wont do what she doesnt want to! I keep telling myself, If she didnt have this attitude, She wouldnt be here! But geez louise girl, give your mama a break! Its okay to back off alittle!!
On a good note, Brielle is a hoot! She makes me laugh everyday, several times a day! Today in the car, she was so tired she was going "aaaaahhhhh aaahhhh" but with her eyes closed. This child protests naps daily! To get a nap in is pure hell too! :) And Ill be sure to tell this child when she is 15 and wants to sleep all day that she blew her chance when she was 2!!
Brielle has about 20 words. She says Boo, Bye, dog, please, bird, dad, drink, hi, done, get, go, down, choo choo, cracker, deer, car, pew, poop, no, yes, cheese, hmm Theres more, but Im drawing a blank. She is such a chatterbox! She will point her one finger at you and tell you a whole story. No clue what she just said, but its cute as heck!
she signs please, more, done, eat, sleep, drink, thank you. She knows her belly, head, eye, nose, and her famous stinky toes!
When asked to "pull my finger" she will make a tooting noise with her mouth. Thats been the highlight to everyone around Brielle.
She loves to go outside now that its finally nice and ride her four wheeler and she would just walk up and down the sidewalk all day long if you'd let her. She hates the swings at the park and will tolerate the slides. Otherwise, she'd rather just walk around. This child just wants to walk!! Walk from the car into the store, thru the store, and back to the car and into the house. She wants to push the cart, not ride in the cart. And she is persistant! Ask Gma Kris who met us at Gordmans in the middle of a complete meltdown because I put her in the cart! Oye! Id say her lungs are doing pretty good!! Tear ducts work as well!
We ask Brielle is she is tired and wants to go upstairs. She will either tell me no and keep playing or she will grab her beloved pink camo dog and head to the babygate. She will try to push the button to release the gate and then she will climb the set of stairs and go to her crib. But then she will fight her nap. Im at a loss for that one!! Its not like I force her to go to bed. I simply ask and she leads the way and then proceeds to have a melt down. Im stumpfed!
Brielle has been pooping on the big girl potty since about Novememberish. My sister sat her daughter on the toilet whos a bit younger than Brielle. I thought hmm and tried it. She took a liking to it and its just kept going. She went in the bathroom the other night when Josh was in there putting stuff away yelling "Poop poop" Josh kept telling her to get out. I told him what she was trying to tell him so he sat her on the potty and sure enough. She is sure learning what she needs/wants to do. She brought her jacket to me the other day (as shes just in a diaper). She will go in the pantry and bring me snacks. She knows when she wants a drink. Shes definately a smart little girl. Her latest is mom reading Brown Bear Brown Bear what do you see to her 8 times a day. The only book that child will sit thru! So keep on reading!!
Ill try to be a good blogger and update after Tuesdays appointment!! :)
Monday, February 13, 2012
been soooo long!
Sorry its been sooo long sincr Ive last blogged! Please excuse my errors as Im on my phone!
Last month Brielle had 16 appointments over 31 days in Janruary! Overwhelming to say the least! Plus add working 2 days a week and one night a week volunteer at the NICU!
Where to start??? I started bring a parent volunteer at the NICU. While I love it, i find it difficult to see all the familys going thru what we lived for 98 days. While Ive been there there have been older babies (28 and up.) If I can help one family, my jobs complete.
Brielle......Brielle is walking more than ever! She is preferring unassisted now vs with her walker. Since my last post, it was discovered that she have the wrong orthodics on her left leg. so I was pretty bummed out by this as I felt that we had just gone 2 weeks and now we were set back once again. then we had to wait another 3 wks for the right one to come in. any who now that that is behind us the new brace is in & Bri is walking really good with that one! She is in a size 2 shoe without a brace on when you put her brace on she is now a size 5 so of course her shoes are really bulky and she is constantly tripping over her own feet. I feel so bad because then she gets super frustrated and starts whining and wants to give up. like her pt says we have to let her out of her shoes to get her confident enough to walk so that she knows that she can do it with her braces off. Easier said than done! plus her feet get extremely hot & sweaty because her feet are so hot in the plastic braces. We ordered her some socks that are close to 30 dollars a pair that are supposed to help keep her feet cooler and sweat away from her feet cool. They are also seamless so theres no "pressure" points! Keep on trucking!
Today one of our many favorite Nicu nurses came over to play with Bri! she took a little bit to get warmed up but then she did not want to come by me when Kathy was trying to leave. It was soo cute! :-)
I am noticing more of "CP behaviors" in Brielle. She walks with both knees bent. She is a very high stepper! When I grab her arms to raise above her head they are so stiff. She cant rotate her arm to put her palm of her hand up. Its honestly heart breaking. There have been more than enough days I just feel like Im done. Do my 10 minute cry fest and pick back up and be supermom again. Noone gets it! Noone understands my pain. I feel I have noone to talk to. It feels my family is in denial so to speak. I feel like Im the only one facing this head on. Im the only one, literally, that HEARS 4 different specialists tell me whats wrong with my child. Does anyone realize as a mother how gut wrenching it is for a therapist/Dr to tell you your daughter needs botox because all the stretching your doing hasnt worked??? Believe me!!!!! I would love to say I have a 1# miracle thats caught up, no disability etc. Thats not reality. The reality is she is a miracle that has a disability that cant be over looked. If I would overlook it where would she be? Not where she is! Just as nurse Kathy graciously pointed out. And another man had to point out her disability yesterday. I had my 16 mo old neice Johanna whos the same size as Brielle. Anyway Hanna climbed up the 4 steps quickly to the slide. Brielle was Still on the bottom. I caught this man looking at me so I looked over. He said "Were taking bets to see how long before she falls and gets hurt." I snapped "WHAT??" He says "well shes slow and wobbly" Now my mama bear claws are out and ready to choke this A-hole, i said "No shes not. She has CP. But thanks!" And walked away. I was crushed because a total stranger is seeing her "disability" and I was upset for Brielle. But damnit she is determined and she tries so so hard at everything she does! I felt like leave my kid alone! Another instance...a little baby walking and he falls. I looked at him as he looked up at me and said good job try again as my 20 mo old is using a walker. His mom asls how old Bri is. I say, 20 mo. She does a double take as kids smaller than Bri are doing laps around her. She says "o. Hes 10 months but a big boy." Now I feel bad because I can tell these parents dont know what to say to me and honestly I dont know what to say back. I dont have it in me anymore to explain to everyone she was a 24 weeker. Then the oooo Im sorry pity comes and I dont want it. Shes doing AMAZING things thus far! I couldnt be more than happy!! Shes so dang smart! Soo happy! So so funny! And shes so cute! I would love to just keep her sheltered and away from remarks but socially and developmentally I know I cant. Itd be easier on my heart.
Botox...I will be talking to Brielle Pediatric rehab Dr about botox in March. Ive been researching and have a list of questions so far. Ive heard such good things about botox and hoping we can do it asap and it helps with limited doses. But only time will tell! Botox will help loosen her hamstrings in her legs so she can sit up straight and not tip over or have her legs up in the air like she does now. It will also help her straighten her legs out so she can walk with a lower step and not have bent knees. There are alot of benefits to it and Ive talked with quite a few parents whos children have had it! There is also lengthening surgery but were not even going there so thats all Ill say! When you get botox tho, its not just a quick fix. My job will get harder! More stretching. More therapy, more time in her braces etc. Sometimes botox will require a cast to be put on after the injection but Im not sure in Brielles case until March. So Ill keep you updated!
Brielle has started walking sideways. She cant walk in a straight line. She always goes to the right. Im glad kathy and Josh see it and its not just me this time! Friday PT Ill be bringing that up!
I have uploaded videos to youtube! Ill work on getting the link! My name is briellesmama
Brielle got a 4 wheeler from us for her 1st bday and we just broke it out! She LOVES LOVES LOVES it!!
She blows (literally) blows kisses. Its sooooo cute!!! She is the love of my life!!!!
I know theres more but my brains fried....Goal is to blog MORE!!!
Last month Brielle had 16 appointments over 31 days in Janruary! Overwhelming to say the least! Plus add working 2 days a week and one night a week volunteer at the NICU!
Where to start??? I started bring a parent volunteer at the NICU. While I love it, i find it difficult to see all the familys going thru what we lived for 98 days. While Ive been there there have been older babies (28 and up.) If I can help one family, my jobs complete.
Brielle......Brielle is walking more than ever! She is preferring unassisted now vs with her walker. Since my last post, it was discovered that she have the wrong orthodics on her left leg. so I was pretty bummed out by this as I felt that we had just gone 2 weeks and now we were set back once again. then we had to wait another 3 wks for the right one to come in. any who now that that is behind us the new brace is in & Bri is walking really good with that one! She is in a size 2 shoe without a brace on when you put her brace on she is now a size 5 so of course her shoes are really bulky and she is constantly tripping over her own feet. I feel so bad because then she gets super frustrated and starts whining and wants to give up. like her pt says we have to let her out of her shoes to get her confident enough to walk so that she knows that she can do it with her braces off. Easier said than done! plus her feet get extremely hot & sweaty because her feet are so hot in the plastic braces. We ordered her some socks that are close to 30 dollars a pair that are supposed to help keep her feet cooler and sweat away from her feet cool. They are also seamless so theres no "pressure" points! Keep on trucking!
Today one of our many favorite Nicu nurses came over to play with Bri! she took a little bit to get warmed up but then she did not want to come by me when Kathy was trying to leave. It was soo cute! :-)
I am noticing more of "CP behaviors" in Brielle. She walks with both knees bent. She is a very high stepper! When I grab her arms to raise above her head they are so stiff. She cant rotate her arm to put her palm of her hand up. Its honestly heart breaking. There have been more than enough days I just feel like Im done. Do my 10 minute cry fest and pick back up and be supermom again. Noone gets it! Noone understands my pain. I feel I have noone to talk to. It feels my family is in denial so to speak. I feel like Im the only one facing this head on. Im the only one, literally, that HEARS 4 different specialists tell me whats wrong with my child. Does anyone realize as a mother how gut wrenching it is for a therapist/Dr to tell you your daughter needs botox because all the stretching your doing hasnt worked??? Believe me!!!!! I would love to say I have a 1# miracle thats caught up, no disability etc. Thats not reality. The reality is she is a miracle that has a disability that cant be over looked. If I would overlook it where would she be? Not where she is! Just as nurse Kathy graciously pointed out. And another man had to point out her disability yesterday. I had my 16 mo old neice Johanna whos the same size as Brielle. Anyway Hanna climbed up the 4 steps quickly to the slide. Brielle was Still on the bottom. I caught this man looking at me so I looked over. He said "Were taking bets to see how long before she falls and gets hurt." I snapped "WHAT??" He says "well shes slow and wobbly" Now my mama bear claws are out and ready to choke this A-hole, i said "No shes not. She has CP. But thanks!" And walked away. I was crushed because a total stranger is seeing her "disability" and I was upset for Brielle. But damnit she is determined and she tries so so hard at everything she does! I felt like leave my kid alone! Another instance...a little baby walking and he falls. I looked at him as he looked up at me and said good job try again as my 20 mo old is using a walker. His mom asls how old Bri is. I say, 20 mo. She does a double take as kids smaller than Bri are doing laps around her. She says "o. Hes 10 months but a big boy." Now I feel bad because I can tell these parents dont know what to say to me and honestly I dont know what to say back. I dont have it in me anymore to explain to everyone she was a 24 weeker. Then the oooo Im sorry pity comes and I dont want it. Shes doing AMAZING things thus far! I couldnt be more than happy!! Shes so dang smart! Soo happy! So so funny! And shes so cute! I would love to just keep her sheltered and away from remarks but socially and developmentally I know I cant. Itd be easier on my heart.
Botox...I will be talking to Brielle Pediatric rehab Dr about botox in March. Ive been researching and have a list of questions so far. Ive heard such good things about botox and hoping we can do it asap and it helps with limited doses. But only time will tell! Botox will help loosen her hamstrings in her legs so she can sit up straight and not tip over or have her legs up in the air like she does now. It will also help her straighten her legs out so she can walk with a lower step and not have bent knees. There are alot of benefits to it and Ive talked with quite a few parents whos children have had it! There is also lengthening surgery but were not even going there so thats all Ill say! When you get botox tho, its not just a quick fix. My job will get harder! More stretching. More therapy, more time in her braces etc. Sometimes botox will require a cast to be put on after the injection but Im not sure in Brielles case until March. So Ill keep you updated!
Brielle has started walking sideways. She cant walk in a straight line. She always goes to the right. Im glad kathy and Josh see it and its not just me this time! Friday PT Ill be bringing that up!
I have uploaded videos to youtube! Ill work on getting the link! My name is briellesmama
Brielle got a 4 wheeler from us for her 1st bday and we just broke it out! She LOVES LOVES LOVES it!!
She blows (literally) blows kisses. Its sooooo cute!!! She is the love of my life!!!!
I know theres more but my brains fried....Goal is to blog MORE!!!
Tuesday, January 3, 2012
We had a great christmas! And I hope you all did too!! Brielle is one spoiled, loved little girl! The monday after christmas I took Brielle to the Dr and she had double ear infection and impetigo in her eye. Today, 8 days later, her ear infection is still here along with a nasty cough, runny nose and wheezing. Her doctor said she has hib virus. So shes on a stronger med and were hoping it will kick it to the curb soon!
Brielle got her orthodics. She is doing pretty well with them! I found a pair of crocs online for $2! Those seem to be the easiest to use with her afos. I am pretty lucky that she adjusts pretty well to whatever we throw on her! Today actually, I left her spio vest off of her because I didnt want to take it on and off at the dr and she is alot more clumsy, doesnt sit up well etc. So I love to see there is a diff when she has it off. She was so smiley in the doc office noone couls believe she waa sick! Peter sais the same thing when he was just here.
Ive noticed lately that when Bri trys to turn her walker she will only turn it to the right. She will turn a full circle right to turn to the left instead of turning to the left. Ill be asking pt on thursday for tips. Or maybe its her quirky/cp dont use the left.
Bri has become one vocal little girl! She knows exactly how to get a rise outta us! She wiggles that little butt of hers to music, its adorable! She loves to blow on her dads duck calls and has become pretty good! She even knows what end she needs to blow on! she has started to fake laugh and then starts to jibber and repeats! Its hilarious! She yells at the dogs while pointing her finger and yelling get/go. she says "bucca bucca bucca" ?? Not sure on that one. she sure lights up our life. I couldnt imagine life without her!! 2011 has been a stressful year and Im glad to hopefully have a joyful non eventful 2012!!
Brielle got her orthodics. She is doing pretty well with them! I found a pair of crocs online for $2! Those seem to be the easiest to use with her afos. I am pretty lucky that she adjusts pretty well to whatever we throw on her! Today actually, I left her spio vest off of her because I didnt want to take it on and off at the dr and she is alot more clumsy, doesnt sit up well etc. So I love to see there is a diff when she has it off. She was so smiley in the doc office noone couls believe she waa sick! Peter sais the same thing when he was just here.
Ive noticed lately that when Bri trys to turn her walker she will only turn it to the right. She will turn a full circle right to turn to the left instead of turning to the left. Ill be asking pt on thursday for tips. Or maybe its her quirky/cp dont use the left.
Bri has become one vocal little girl! She knows exactly how to get a rise outta us! She wiggles that little butt of hers to music, its adorable! She loves to blow on her dads duck calls and has become pretty good! She even knows what end she needs to blow on! she has started to fake laugh and then starts to jibber and repeats! Its hilarious! She yells at the dogs while pointing her finger and yelling get/go. she says "bucca bucca bucca" ?? Not sure on that one. she sure lights up our life. I couldnt imagine life without her!! 2011 has been a stressful year and Im glad to hopefully have a joyful non eventful 2012!!
Saturday, December 17, 2011
Only the best!
So this past week was a busy one yet again!
The other night, Josh and I were in the living room and Brielle was in the family room with the dogs and the tree. She had her walker and was playing with the dogs. The dogs dropped their ball so Brielle went down to get it. She was in a crawling position and stood up all by herself with NOTHING to hold onto!!! Now, I dont think I can express in writing how HUGE this is!! We have been working on this for 2 months!!!! After Ms. Lisa has showed her over and over, she FINALLY DID IT!!! I of course, had to text Ms. Lisa right away!! She was soooooo proud!!! Ms. Lisa also has us standing her on a wall or the couch to let her get the feeling of getting her balance herself and then starting to walk when she feels ready! She is doing sooooo well!! She can take up to 5 steps! I think we get sooo excited, we make her soooo excited so she trys to run to us and then looses her balance. If she slows down she does better. But shes doing AMAZING!! Orthodics come Tuesday!
Monday we had Speech therapy. That was a good appointment. Over the past few weeks we have been working on getting Brielles Diaphram and rib cage to lower/stretch out. So to achieve this we take our thumbs and apply light pressure on her back. Our other 4 fingers go around her front and on her ribcage. You apply the light pressure on your thumbs and then the 4 fingers pull back towards your thumb. While doing that, you put her on your legs and bounce her. You can tell how she opens up because she starts "singing." Ms Lisa could definately tell she was opening up more and she said she sounded louder!! Thats one thing almost everyone tells me is that Brielle is soooo quiet. Hmmmm Must just be me that thinks otherwise :)
Tuesday we had physical therapy. She said Brielle is tighter than 2 weeks ago! Her hamstrings are tight and her lower back is now tight. So to stretch that we just put her on her back with her feet on the floor, knees bent and have her lift her pelvis to create a "bridge" NOT a big fan of Brielles! Her hammys are tighter due to her wanting to walk more and more! So just keep stretching as much as we can.
Occupational came Tuesday as well. We have been working more and more on Brielles Sensory Integration disorder (SID). She brought a bunch of toys. Im not sure the "correct" term what have you for them, but they are the slimy, stretchy etc. Brielle was not exactly into them but could not put them down. Her face was "YUCK, ICK, UH!" But she couldnt stop grabbing for them. Ms Terri gave us a "corn brush" to desensitize her. We have to rub each arm from pit to wrist, leg from hip to ankle, Back from Diaper to neck line, Hands, and feet Every 2 hours! We dont do her face or her head. This should help with the SID. "Red Flags" Of SID that we have noticed in Brielle are Sensitivity to loud sounds (ex. at the parade, she did not like the horns, loud music etc.), movements (If you scare her she really freaks out! Ask Papa Brad!!!!!) Those are increased sensitivity. She has Decreases Sensitivity to foods. She prefers spices and the more flavorful foods. As we are finding out with her refusing to eat, anything with alot of flavor such as Chix alfredo, lasagna, taco meat...Are more appealing than chicken nugget or cereal. Increase or decreased in activity level: Increased sleep. Brielle will usually sleep 12 hours at night and take 2-3 2.5 hour naps per day and then 1 hour nap. According to her ped, a "normal" 18 month old take 1-2 naps a day. Little signs, but they all lead to it. Brielles worst SID is on her feet and chest. My "Theory" and OT doesnt disagree with me, is that she had soooo many heel pokes (And has quite the scars to prove it!) she doesnt want anyone touching her feet! The nurses actually warned us of this in the NICU already. Her chest?? Not sure since she hasnt had any surgery on her chest. Maybe the leads???? Not sure where that one came from.
Wednesday we had her RSV shot. Number 2 this winter. Dad was unable to make this appt so I went by myself. Uhm, Ya! Probably wont happen again. The nurses always seem like they are in a hurry, as they usher you in a room, tell you to get undressed so they can weigh, rush off to get a new baby, put them in a room, come get you, get weight, go get new child, give shot, They are ALWAYS running! So anyways, I went to put her on the scale and she FREAKED.Out!.! She was trying so desperately to get in my arms they couldnt get a proper weight on her. So I had to try to force her to lay there which wasnt going to happen. After a minute she finally just caved and layed there and cried and we got the weight. Imagine that, From 2 weeks prior NO FREAKING WEIGHT GAIN! UGH! But I guess atleast she didnt lose any. So we get back to the room and shes fine playing what have you. I got her pj top on and put her coat on since I knew after the shot shes NOT a happy girl and hates putting her coat on anyways. The nurse took awhile to come back in. When she came back in, Brielle immediately FREAKED out once again! She wasnt even on the table and she was already crying. Talk about feeling like a shit ass mom when you have to lay your screaming child down to be pinned down by the legs to get poked not only once, but twice! I felt horrible!! I know the shots are the best thing for her but damn it makes me feel horrible to put her thru that! This poor child has been thru more crap than most adults have in their 40s!!! And then when I went to put her in the car she grabbed my jacket and put her head on my shoulder. AH! Talk about feeling bad for not being able to cuddle!!
Then Thursday we had to go down to Milwaukee to see a pediatric orthopedic about the never ending hip clicks. Josh lays her on the table so the doctor can just rotate her hips....Flips out!!!!! It amazes me how their little minds are sooo mature to know or remember certain events. The conclusion of that appointment was that Brielles hips look great. Hip Displasia out of the question as she is now too old and would have had it already. YAY! He said that she is a prime candidate to develop some sort of neuro muscular problem down the road, but it is much too early to tell if that will or will not happen at this point in time. He said that she has some soft tissue in her hips that is causing the clicking. But nothing to be alarmed about. He basically told me to ignore/forget/discard/try not to get excited about the clicking. YA okay! Everytime she clicks/pops/clunks etc I cant take it. It feels so prominate it hurts me! But I did ask him if she was in any pain and he said absolutely not! Okay, thats all that matters! As long as she doesnt feel it, Ill learn to "get over it!" Of course Josh had to say "Told you she was alright." Maybe she is. Maye I thought she was. BUT as a mother, it is NOT okay for me to not check up on any concern I have. If I would have waited a year and went in and he said "O if we would have caught this sooner......." I couldnt deal with myself. I guess from the gecko we've always had to cross our Ts and dotting our I's with her and I just keep doing that. I dont want to miss anything that can be fixed, slowed down, or altered in an way! Im trying my damnest to give my little miracle the best life possible! She deserves the best!
The other night, Josh and I were in the living room and Brielle was in the family room with the dogs and the tree. She had her walker and was playing with the dogs. The dogs dropped their ball so Brielle went down to get it. She was in a crawling position and stood up all by herself with NOTHING to hold onto!!! Now, I dont think I can express in writing how HUGE this is!! We have been working on this for 2 months!!!! After Ms. Lisa has showed her over and over, she FINALLY DID IT!!! I of course, had to text Ms. Lisa right away!! She was soooooo proud!!! Ms. Lisa also has us standing her on a wall or the couch to let her get the feeling of getting her balance herself and then starting to walk when she feels ready! She is doing sooooo well!! She can take up to 5 steps! I think we get sooo excited, we make her soooo excited so she trys to run to us and then looses her balance. If she slows down she does better. But shes doing AMAZING!! Orthodics come Tuesday!
Monday we had Speech therapy. That was a good appointment. Over the past few weeks we have been working on getting Brielles Diaphram and rib cage to lower/stretch out. So to achieve this we take our thumbs and apply light pressure on her back. Our other 4 fingers go around her front and on her ribcage. You apply the light pressure on your thumbs and then the 4 fingers pull back towards your thumb. While doing that, you put her on your legs and bounce her. You can tell how she opens up because she starts "singing." Ms Lisa could definately tell she was opening up more and she said she sounded louder!! Thats one thing almost everyone tells me is that Brielle is soooo quiet. Hmmmm Must just be me that thinks otherwise :)
Tuesday we had physical therapy. She said Brielle is tighter than 2 weeks ago! Her hamstrings are tight and her lower back is now tight. So to stretch that we just put her on her back with her feet on the floor, knees bent and have her lift her pelvis to create a "bridge" NOT a big fan of Brielles! Her hammys are tighter due to her wanting to walk more and more! So just keep stretching as much as we can.
Occupational came Tuesday as well. We have been working more and more on Brielles Sensory Integration disorder (SID). She brought a bunch of toys. Im not sure the "correct" term what have you for them, but they are the slimy, stretchy etc. Brielle was not exactly into them but could not put them down. Her face was "YUCK, ICK, UH!" But she couldnt stop grabbing for them. Ms Terri gave us a "corn brush" to desensitize her. We have to rub each arm from pit to wrist, leg from hip to ankle, Back from Diaper to neck line, Hands, and feet Every 2 hours! We dont do her face or her head. This should help with the SID. "Red Flags" Of SID that we have noticed in Brielle are Sensitivity to loud sounds (ex. at the parade, she did not like the horns, loud music etc.), movements (If you scare her she really freaks out! Ask Papa Brad!!!!!) Those are increased sensitivity. She has Decreases Sensitivity to foods. She prefers spices and the more flavorful foods. As we are finding out with her refusing to eat, anything with alot of flavor such as Chix alfredo, lasagna, taco meat...Are more appealing than chicken nugget or cereal. Increase or decreased in activity level: Increased sleep. Brielle will usually sleep 12 hours at night and take 2-3 2.5 hour naps per day and then 1 hour nap. According to her ped, a "normal" 18 month old take 1-2 naps a day. Little signs, but they all lead to it. Brielles worst SID is on her feet and chest. My "Theory" and OT doesnt disagree with me, is that she had soooo many heel pokes (And has quite the scars to prove it!) she doesnt want anyone touching her feet! The nurses actually warned us of this in the NICU already. Her chest?? Not sure since she hasnt had any surgery on her chest. Maybe the leads???? Not sure where that one came from.
Wednesday we had her RSV shot. Number 2 this winter. Dad was unable to make this appt so I went by myself. Uhm, Ya! Probably wont happen again. The nurses always seem like they are in a hurry, as they usher you in a room, tell you to get undressed so they can weigh, rush off to get a new baby, put them in a room, come get you, get weight, go get new child, give shot, They are ALWAYS running! So anyways, I went to put her on the scale and she FREAKED.Out!.! She was trying so desperately to get in my arms they couldnt get a proper weight on her. So I had to try to force her to lay there which wasnt going to happen. After a minute she finally just caved and layed there and cried and we got the weight. Imagine that, From 2 weeks prior NO FREAKING WEIGHT GAIN! UGH! But I guess atleast she didnt lose any. So we get back to the room and shes fine playing what have you. I got her pj top on and put her coat on since I knew after the shot shes NOT a happy girl and hates putting her coat on anyways. The nurse took awhile to come back in. When she came back in, Brielle immediately FREAKED out once again! She wasnt even on the table and she was already crying. Talk about feeling like a shit ass mom when you have to lay your screaming child down to be pinned down by the legs to get poked not only once, but twice! I felt horrible!! I know the shots are the best thing for her but damn it makes me feel horrible to put her thru that! This poor child has been thru more crap than most adults have in their 40s!!! And then when I went to put her in the car she grabbed my jacket and put her head on my shoulder. AH! Talk about feeling bad for not being able to cuddle!!
Then Thursday we had to go down to Milwaukee to see a pediatric orthopedic about the never ending hip clicks. Josh lays her on the table so the doctor can just rotate her hips....Flips out!!!!! It amazes me how their little minds are sooo mature to know or remember certain events. The conclusion of that appointment was that Brielles hips look great. Hip Displasia out of the question as she is now too old and would have had it already. YAY! He said that she is a prime candidate to develop some sort of neuro muscular problem down the road, but it is much too early to tell if that will or will not happen at this point in time. He said that she has some soft tissue in her hips that is causing the clicking. But nothing to be alarmed about. He basically told me to ignore/forget/discard/try not to get excited about the clicking. YA okay! Everytime she clicks/pops/clunks etc I cant take it. It feels so prominate it hurts me! But I did ask him if she was in any pain and he said absolutely not! Okay, thats all that matters! As long as she doesnt feel it, Ill learn to "get over it!" Of course Josh had to say "Told you she was alright." Maybe she is. Maye I thought she was. BUT as a mother, it is NOT okay for me to not check up on any concern I have. If I would have waited a year and went in and he said "O if we would have caught this sooner......." I couldnt deal with myself. I guess from the gecko we've always had to cross our Ts and dotting our I's with her and I just keep doing that. I dont want to miss anything that can be fixed, slowed down, or altered in an way! Im trying my damnest to give my little miracle the best life possible! She deserves the best!
Saturday, December 10, 2011
Thank you everyone!
So my mom pointed out to me today, after talking to two former NICU parents she ran into, that I need to start blogging more. My words, not hers. I guess for myself, I thought not many read anymore. But looking at my "Stats" page and people commenting to me about peices of my blog, and people telling family they love to read the blog, I owe it to everyone of you that have kept up and keep reading my venting, good news, bad news, important, not important BLOGS! To those of you that are keeping up with our life and enjoy reading, THANK YOU! THANK YOU! THANK YOU! I enjoy blogging. I love it for a few reasons.
1. Its my "therapy." I get all my feelings out and on paper and I dont have to bottle them in.
2. I cant forget to tell people things!! I feel like my head is being filled up with helium and Im trying to weight it down. There is so much going on, and so much to remember, I cant keep up! So its a good place to put it all down and I can look back if I forget or I can tell people to just read the blog! Plus, more so when we were in the hospital, I dont have to call 10 people and repeat myself time after time. Sometimes Im just exhausted from the inital news, or what have you, and I dont feel like telling anyone! So its just to have it out there so anyone can read our latest and read in their convienience!
3. I love the fact that I will forever have this and it is something that Brielle can eventually read! (And know WHY her father is gray at 30!)
4. I hope that my blog reaches out and touches atleast one person! If I can some way, some how touch one persons life, My job is done! When my water broke, I was clueless! You are supposed to carry to 40 weeks. I was 20. I had always heard you had to deliver that baby 24 hours after your water broke. I was 20! I knew my babies wouldnt survive. When faced with the question to terminate, YES never crossed my mind. I wanted these babies in the worse possible way. I would not give up. But there are alot of women out there that do. If one of those women find my blog, and do not terminate due to pProm, My job is complete! I want the information OUT THERE! Which is why my blog is public.
We had Brielles 18 month check up Monday. This appt didnt go as well as her others! She lost weight from her 15 month appt. No gain. LOST! She is 19 lbs 2oz. I kinda knew this as she was 19lbs 4oz 2 weeks ago at her RSV appt. But as I was talking to her PT today about it she said that CP kids do loose weight as they have low muscle tone so it takes SO much MORE to do the little things, like walk. She burns more trying to do those things. Ok, Makes sense! And I did read that from another CP mom. Dr. Krainik wants me to bring her back in a month and see where she is at on the scale etc. Hes not toooo toooo worried about it YET, but wants to watch her closely. My worry is, I have been journaling now what she is eating (just in case, cuz Im a freak like that!) and now that its on paper, its not alot of food! So Im hoping its more so that its the muscle tone and NOT eating habits. This girl used to be such a good eater, sometimes downing 2! hot dogs at a feeding and a whole can of oranges! to skipping lunch or dinner most days. :( I just dont want her to loose too much weight as I know its important for development.
Ive been putting Brielle on the big girl potty! Shes pooped 5 times so far by herself on there!!! Since we started it about 2 weeks ago, she hasnt pooped in her diaper. Shes pretty proud of herself!! She quite funny, Josh told her to "Grab your ankles" while trying to push, (remember this girl is constipation QUEEN!) so now, her Que that she has to go, she pulls her ankles up when shes sitting. Its cute! But lets us know too! :)
The other night I was changing the birds water and I had just taken down the baby gate on his door, and set it outside his door against the closet door. I grabbed the water dish and headed out the door. Brielle had followed me in there, so I just turned her walker around and scooted her out the door. I cut the corner too short as I was stepping around her, and took the baby gate out with my right leg. The metal part grabbed my leg right above the sock and dug in and I went straight down on the wood floor. There was no time to even catch myself. I fell hard. The water went flying and down I went. Brielle of course FREAKED right out, crying hysterical. Josh was trying to roll me as I was face down. I thought I broke my leg it was that bad! I told him to not touch me and go get Brielle. Brielle was still freaking out so I knew I had to just suck it up and get up because she was panicking now. So I sat up and took off my drenched sweater. Josh set her down to come by me and she couldnt get by me fast enough. She got to me and hug me so quickly and......PATTED MY BACK! AWE I cried even harder then!!! It was like "Its okay mommy!" :) My little girl!! OOOO how I love that little girl!! She wouldnt stop giving me hugs, it was freaking adorable!! 2 bruised knees later and quick the mark on my leg, I learned how caring my 18 month old is!
Yesterday Brielle took 4 steps unassisted!!!! She is a maniac with her walker!! Now by walker I mean a push behind toy. She whips that thing around to go wherever she wants. We take it everywhere with us as you can tell she is truly proud to be able to walk and the freedom to get around. Physical therapy was going to put her in a walker that we special order but because she does sooo well with the cheapo $3 rummage sale find walker they just left it at that. She even has walking with it going backwards down! She has even mastered running with this walker! She still trips and falls, but shes not discouraged and she gets right back up and goes at it full force again. Her orthodics come Dec 20, so Im hoping then she will get walking down pat. I know that she is going to LOVE the walking with nothing to hold on to. She always tries to set her dog on the walker handle and go with him, but he always falls and then she just pushes it with the walker. The other day I was Not feeling good so I just layed on the couch and she had free rain of the house. She was an angel!!! I was very proud of her! Only once did I see the whole entire tree shaking like crazy! The dogs were fighting so I told her to break them up. She did!! I was impressed! She whipped her walker around and went full force between them! It was quite funny! The dogs were like WTH just happened! But it stopped them! hehe
Today was Brielle intervention christmas party that her therapists all put on for the kiddos. Brielle did not like santa one bit!! She wouldnt even go close to him!! It was nice to see other kids with special needs. Other kids with walkers. Other kids her age not walking etc. Makes us SEE were not alone one bit. It kind of puts me back in reality as well. There were 3 kids in wheel chairs. Cute as a button! But it totally made me question why I think I have the right to be sad about my 18 month old thats not walking yet. But then I think back to the training class I had to take to be a parent host in the NICU. They taught us that everyones "WORSE" and everyones "GOOD/OK" are different. A minor hernia surgery, where the baby goes home THAT day, like Brielle had, may be the worst thing for one parents and Ok for the next. Everyone views situations differently. Alot of people tell me how strong I am. How they could never lay in the same bed for 3 weeks and never get up. How they could never do a 98 day NICU stay on top of the 3 weeks. How they could never handle a baby on oxygen. How they could not do all the therapys, Drs, or CP diagnosis. My answer is, yes you can! Yes.you.would. Its easy to just give up. Its easy to just walk away. Its easy to not try. Trust me, there are days where I could just crawl in a hole. But what good would that do? If I wouldnt have layed in bed, Brielle probably wouldnt be here. We didnt have a choice to do a NICU stay. I think when your in the position, you go into survival mode. PLUS, the NICU staff, Drs, nurses, and respirtatory therapists were AMAZING! We only had one nurse that we had problems with, and that was taken care of right away, The rest were amazing! We could not have asked for better care! Not only care for Brielle, but us. Alot of those nurses became our friends and second mothers! They seen us in our best place possible, but also were there to hug us at our worst moments ever. We cant ever repay them! They are miracle workers! And I have quite the smiley, happy go lucky, little girl to prove it!!
1. Its my "therapy." I get all my feelings out and on paper and I dont have to bottle them in.
2. I cant forget to tell people things!! I feel like my head is being filled up with helium and Im trying to weight it down. There is so much going on, and so much to remember, I cant keep up! So its a good place to put it all down and I can look back if I forget or I can tell people to just read the blog! Plus, more so when we were in the hospital, I dont have to call 10 people and repeat myself time after time. Sometimes Im just exhausted from the inital news, or what have you, and I dont feel like telling anyone! So its just to have it out there so anyone can read our latest and read in their convienience!
3. I love the fact that I will forever have this and it is something that Brielle can eventually read! (And know WHY her father is gray at 30!)
4. I hope that my blog reaches out and touches atleast one person! If I can some way, some how touch one persons life, My job is done! When my water broke, I was clueless! You are supposed to carry to 40 weeks. I was 20. I had always heard you had to deliver that baby 24 hours after your water broke. I was 20! I knew my babies wouldnt survive. When faced with the question to terminate, YES never crossed my mind. I wanted these babies in the worse possible way. I would not give up. But there are alot of women out there that do. If one of those women find my blog, and do not terminate due to pProm, My job is complete! I want the information OUT THERE! Which is why my blog is public.
We had Brielles 18 month check up Monday. This appt didnt go as well as her others! She lost weight from her 15 month appt. No gain. LOST! She is 19 lbs 2oz. I kinda knew this as she was 19lbs 4oz 2 weeks ago at her RSV appt. But as I was talking to her PT today about it she said that CP kids do loose weight as they have low muscle tone so it takes SO much MORE to do the little things, like walk. She burns more trying to do those things. Ok, Makes sense! And I did read that from another CP mom. Dr. Krainik wants me to bring her back in a month and see where she is at on the scale etc. Hes not toooo toooo worried about it YET, but wants to watch her closely. My worry is, I have been journaling now what she is eating (just in case, cuz Im a freak like that!) and now that its on paper, its not alot of food! So Im hoping its more so that its the muscle tone and NOT eating habits. This girl used to be such a good eater, sometimes downing 2! hot dogs at a feeding and a whole can of oranges! to skipping lunch or dinner most days. :( I just dont want her to loose too much weight as I know its important for development.
Ive been putting Brielle on the big girl potty! Shes pooped 5 times so far by herself on there!!! Since we started it about 2 weeks ago, she hasnt pooped in her diaper. Shes pretty proud of herself!! She quite funny, Josh told her to "Grab your ankles" while trying to push, (remember this girl is constipation QUEEN!) so now, her Que that she has to go, she pulls her ankles up when shes sitting. Its cute! But lets us know too! :)
The other night I was changing the birds water and I had just taken down the baby gate on his door, and set it outside his door against the closet door. I grabbed the water dish and headed out the door. Brielle had followed me in there, so I just turned her walker around and scooted her out the door. I cut the corner too short as I was stepping around her, and took the baby gate out with my right leg. The metal part grabbed my leg right above the sock and dug in and I went straight down on the wood floor. There was no time to even catch myself. I fell hard. The water went flying and down I went. Brielle of course FREAKED right out, crying hysterical. Josh was trying to roll me as I was face down. I thought I broke my leg it was that bad! I told him to not touch me and go get Brielle. Brielle was still freaking out so I knew I had to just suck it up and get up because she was panicking now. So I sat up and took off my drenched sweater. Josh set her down to come by me and she couldnt get by me fast enough. She got to me and hug me so quickly and......PATTED MY BACK! AWE I cried even harder then!!! It was like "Its okay mommy!" :) My little girl!! OOOO how I love that little girl!! She wouldnt stop giving me hugs, it was freaking adorable!! 2 bruised knees later and quick the mark on my leg, I learned how caring my 18 month old is!
Yesterday Brielle took 4 steps unassisted!!!! She is a maniac with her walker!! Now by walker I mean a push behind toy. She whips that thing around to go wherever she wants. We take it everywhere with us as you can tell she is truly proud to be able to walk and the freedom to get around. Physical therapy was going to put her in a walker that we special order but because she does sooo well with the cheapo $3 rummage sale find walker they just left it at that. She even has walking with it going backwards down! She has even mastered running with this walker! She still trips and falls, but shes not discouraged and she gets right back up and goes at it full force again. Her orthodics come Dec 20, so Im hoping then she will get walking down pat. I know that she is going to LOVE the walking with nothing to hold on to. She always tries to set her dog on the walker handle and go with him, but he always falls and then she just pushes it with the walker. The other day I was Not feeling good so I just layed on the couch and she had free rain of the house. She was an angel!!! I was very proud of her! Only once did I see the whole entire tree shaking like crazy! The dogs were fighting so I told her to break them up. She did!! I was impressed! She whipped her walker around and went full force between them! It was quite funny! The dogs were like WTH just happened! But it stopped them! hehe
Today was Brielle intervention christmas party that her therapists all put on for the kiddos. Brielle did not like santa one bit!! She wouldnt even go close to him!! It was nice to see other kids with special needs. Other kids with walkers. Other kids her age not walking etc. Makes us SEE were not alone one bit. It kind of puts me back in reality as well. There were 3 kids in wheel chairs. Cute as a button! But it totally made me question why I think I have the right to be sad about my 18 month old thats not walking yet. But then I think back to the training class I had to take to be a parent host in the NICU. They taught us that everyones "WORSE" and everyones "GOOD/OK" are different. A minor hernia surgery, where the baby goes home THAT day, like Brielle had, may be the worst thing for one parents and Ok for the next. Everyone views situations differently. Alot of people tell me how strong I am. How they could never lay in the same bed for 3 weeks and never get up. How they could never do a 98 day NICU stay on top of the 3 weeks. How they could never handle a baby on oxygen. How they could not do all the therapys, Drs, or CP diagnosis. My answer is, yes you can! Yes.you.would. Its easy to just give up. Its easy to just walk away. Its easy to not try. Trust me, there are days where I could just crawl in a hole. But what good would that do? If I wouldnt have layed in bed, Brielle probably wouldnt be here. We didnt have a choice to do a NICU stay. I think when your in the position, you go into survival mode. PLUS, the NICU staff, Drs, nurses, and respirtatory therapists were AMAZING! We only had one nurse that we had problems with, and that was taken care of right away, The rest were amazing! We could not have asked for better care! Not only care for Brielle, but us. Alot of those nurses became our friends and second mothers! They seen us in our best place possible, but also were there to hug us at our worst moments ever. We cant ever repay them! They are miracle workers! And I have quite the smiley, happy go lucky, little girl to prove it!!
Wednesday, November 30, 2011
Brielles Team of Doctors/Therapists keep growing!
Today was Brielles Physical Therapy appointment. I was going to bring up how much more I thought her hip was clicking, but the therapist caught it right away and questioned it. (I love Lisa!) Anyway, I told her that I did not like the "opinion" of the Rehab doctor we went to see a few weeks back. Her opinion was to just watch it and see if it got worse or less and see her again in March. I was uneasy about that response to the clicking as Brielle has always had clicking since day one. But I thought I'll go with it seeing as shes the doctor but its still on the tip of my brain and I WILL be watching it close. So as Im watching it closely, Ive noticed its clicking pretty loudly and alot more! If I hold her, and she turns to look in a different direction, her hip will click. Its pretty dominent which freaks me out! So Lisa grabbed Brielle right away and BAM...HIP CLICK! She said she stopped counting at 10 and that was only in a matter of minutes. MINUTES. Thats not right. Thats not normal. She said "Im worried." I felt bad. I started to tear up. Mother intuition? Mothers gut instinct? Yesterdays blog post came to me. All the therapy appts this week (1 more to go!), and now my gut instinct was right and now the therapist is officially "worried." She said that it is not right that her hip is clicking and popping this much! She was commenting how badly Brielle just wants to GO and WALK and that got to me too. I just couldnt hold back the tears. I knew Lisa felt bad, and that wasnt my intention. Alot of moms say Im strong and they couldnt handle what Josh and I are handling, but somedays I cant handle it either! There are days I just wish I had a "normal" life. I try hard to get past those feelings. I love this little girl with all my heart. She is so perfect in my eyes! Her little giggle lights up my life! Her smile lights up a room! Its just not fair she has to go thru all this crap! Sooo we called up a Pediatric Orthopedic and we are headed to Milwaukeee once again. So Brielles team of Doctors and therapists keep growing.
Early intervention Teacher- Gretchen
Physical therapist- Lisa L
Occupational therapist-Terri
speech therapist- Lisa B
Pulmanolgoist-Dr. Noe
Pediatric Rehab and medicine Doctor- Dr.Morberg
Orthodic therapist (Spio and Brace guy)-Peter
Pediatric Orthopedic-Dr. Tassone
Pediatric opthamologist-Dr. Parsa
And her everyday Pediatrician-Dr. Krainik
My calender for December is already full. When will this madness stop?? I will take a slow down for now!!!!!
Early intervention Teacher- Gretchen
Physical therapist- Lisa L
Occupational therapist-Terri
speech therapist- Lisa B
Pulmanolgoist-Dr. Noe
Pediatric Rehab and medicine Doctor- Dr.Morberg
Orthodic therapist (Spio and Brace guy)-Peter
Pediatric Orthopedic-Dr. Tassone
Pediatric opthamologist-Dr. Parsa
And her everyday Pediatrician-Dr. Krainik
My calender for December is already full. When will this madness stop?? I will take a slow down for now!!!!!
Subscribe to:
Posts (Atom)