Baby Steps

If Alyssa has taught me anything, which she has taught me a lot, but one important thing she has taught me is patience. I have to be patient with her progress. For it isn't like any one else's. And it doesn't come with a timeline some therapist or neurologist made up. It comes on what I like to call Alyssa's time. She is nineteen months now. I can't believe it. She is really growing up too fast. Speaking of up, she is SITTING UP!!!! She still can't sit herself up from a lying down postion, but can from a propped position. She can sit there for as long as she wants to, which is sometimes not very long at all. She got AFO's for her legs, and for those that don't know what that is it is Ankle Foot Orthodics. They are really helping her strengthen her muscles in her legs and she can now stand up better. She can actually stand at a table for about 5 seconds all by herself. Of Course I am right there to catch her if she starts to break down. She will take steps holding my hands, but is still very wobbly in the trunk area. We hope to have a gait trainer for her soon. I figure it will be a little while before she can use it, but she may surprise me.
Another baby step she accomplished today was figuring out how to move forward in her walker. She has done it before, but wasn't sure how she did it. Today she figured out how to get her legs to push her forward instead of backwards. I got it on video for just a second.
She has been sick with a cold and man, what a Mama's girl she has been the past few days. She has actually converted to a Mama's girl for the past few weeks. And it doesn't matter how tired I am, when that word Mama, comes out of her sweet lips with that precious voice attached, I melt. I am puddy in her hands. She has started saying a few words better than she was. Daddy is coming out DaDa now instead of VaVa. She is making fishy sounds with her lips when you say the word Goldfish. She loves the Goldfish crackers. She loves the lights in the ceiling, but calls them flowers when a ceiling fan is attached. She is so much smarter than any body not around her much would give her credit for. She is the biggest clown too. Anything that can get you to laugh makes her day. She pulls Bubba's(Easton's hair) so hard it should be falling out, but he doesn't care. She aggravates him when they are in the car too. If he sits up to look out the window she is going to pull on his shirt and holler at him until he sits back so she can see him. He also tells her no no when she is trying to pull her arm out of the car seat strap, and now the only time she does it is when he is in the car, and then it is only so he will tell her no no. She teases him about it. She likes the Christmas tree, but doesn't seem to be overally excited about it. She has touched the lights and pulled at a few ornaments, and I am sure if she was mobile would give it heck, but for now is content to just look at it when we walk past. She still couldn't care less about crawling. We were given homework from therapy to work on her crawling. I have been moving her legs in the bicycle motion with her lying on her tummy. She tells me forever more what for, but I do think it is helping her to realize how she is going to have to move. I think she would just as soon walk than to ever crawl. Who knows? She may just do that.
As far as baby steps go, Alyssa, is definitely taking them. It seems like she isn't ever going to do something, but I remember when I didn't think she would ever sit up. And she did. So that is what I think about when I forget to be patient and wait for Alyssa time. I don't take anything she does for granted. Everything she does from smiling to sitting, from rolling to standing, and from eating to sleeping I enjoy every little thing about it. It has also taught me not to take anything Easton does lightly either. He is amazing. He loves Alyssa so much and her him too. He is the best big brother anyone could ask for. He was on the Special Honor roll at school, and he wants to learn his mulitiplication tables. He is only in second grade. He loves basketball, video games, and pizza. And I always want to remember these baby steps in his life too. Our children grow up too fast, and sometimes we whine about having to help them get dressed, or having to help them brush their hair, or having to fix them something to eat, or all laundry we have to do. Just take some time to breath, and during that time remember, It is only for a little while. Life is too short and I think we all need to slow down and perhaps progress on Alyssa time.

The sweetest voice

Alyssa is doing really well with her talking, and she knows a few signs too. Her favorite word is Mama, but she can say puppy, Bubba, VaVa (DaDa), Hi, Bye Bye, and she can sign love you, more, all done, music, and a few others words and signs. She can sit up for a while by herself now, but still can't sit up from a lying flat position. She can sit up from a propped position like off of a pillow. Her last shunt surgery is still holding strong, and we hope it continues to do so. I pray every day and night that her shunt keeps working and we don't have to make anymore dreaded trips to LeBonheur. The people at LeBonheur are amazing. I can't say enough about them. All the nurses and doctors are wondeful, and will go out of there way to make you comfortable. We went in one trip without anything with us. It was an emergency situation, and we didn't take a brush, toothbrush, shampoo, and some other things with us. They provided it to us happily. We forgot our phone chargers and one of the nurses had one for us to borrow. So like I said the hospitality is amazing there.
Back to the talking. My husband's father is in a rehab center right now because of a stroke. His left side was affected. He loves Alyssa and Easton so much. Well, today he was at his sister's funeral. Alyssa is sitting in my lap in the church, which is pretty quite during this time, and Mr. Gara rolls back in his wheelchair to see her. As soon as he is within her sight she says, "Hi, PawPaw," I think everyone must have heard her. It was the sweetest voice.
And when she says Mama, my heart melts. Everytime I hear it come out of her precious lips and see them press together to form the word, my heart melts. At that point I am puddy in her hands. It is the sweetest voice I have ever heard because we didn't know if she would talk. Her right side of the brain is what was affected the most. And the right side of the brain is where the language skills are thought to be built. Everyday she amazes me.

Gifts from God

I have a son named Easton, and most of his life has been healthy. He hasn't had to have anything except tubes in his ears and tonsils out. He crawled at 8 months old, he walked at 10 months old, and he ran by the time he was 13 months old and pretty much never slowed down. I'll admit he isn't the greatest eater in the world. He is probably the pickiest one, but as far as I know he is healthy. I thank God for that every day. I no longer take that for granted. It is a blessing that some people overlook. People that would rather be out drinking, partying, doping, or whatever else comes into their minds. People that give their children up on a whim, or beat them to death for asking for a drink of water in the middle of the night. The ones that don't want them and give them away because the weren't planned. Children are a gift from God. He puts every single one of them here on this earth for a reason. Healthy or not they are all here for a purpose and they are all human beings who deserve to be loved, cared for, and raised by responsible parents that wanted them to begin with.
I say all of this because my daughter has hydrocephalus. She has had three brain surgeries now, and she is only 16 months old. She has been put to sleep a total of 5 times in her life and two of those were yesterday. She is so amazingly strong. Tuesday was an ordinary day and she was fine. She laughed, played, giggled, ate, drank, and was as happy as any normal 16 month old baby. Tuesday night she went to bed around 9pm. At 1am we were  up because she woke up crying. It took us a little while to calm her down and get her back to bed. She was drawing her legs up like she had a tummy ache. Finally back to sleep about 2, but that wasn't the end of it. Thirty minutes later back awake and fussy again. She was in the bed between us and I raised her up to see if it would help her feel better. That's when she threw up all over me, the bed, and herself. Since I had been a little nauseous a few days before this I figured she had caught it from me. She seemed to ease up a little after this and slept for about three hours. Then it was back up really fussy again. We got Easton to school and headed for LeBonheur. The hour and a half trip seemed like an eternity. Alyssa got extremely fussy as we made it to hwy 55. She was in pain and couldn't quit crying. She kept putting her little hands up to her head and crying out. She rubbed and rubbed her little eyes till they were red as apples. We get to LeBonheur and through her discomfort she had to endure being weighed and measured and temperature taken in places no one likes. She had to be completely still for a CT scan to be administered and then x-rays to be taken. All the while not understanding why these strange people were holding her down. Not understanding why they wanted to hurt her. Especially when she had to have her IV put into her tiny little hands where her veins are hard to see and poke. Then be put to sleep for half hour for an MRI. And before surgery was able to begin she was uncontrollably screaming and crying from the pressure in her head. I feared it would cause her more damage. The neurosurgeon got on the ball and she was finally put to sleep yet again for an hour and a half for her third brain surgery. In recovery she opens her swelled little eyes and looks up at me and says in a week voice "Hi." Then a small fraction of a smile is sent my way. She closes her lids and rest a while longer. She didn't want to be touched at this point. Every time someone even me and daddy would touch her she would cry out in protest. She literally wanted to be left alone. Finally I started singing Twinkle Twinkle Little Star to her softly and she calmed down. We got back to our room where family was waiting anxiously to see her. She spoke to everyone with her little Hi. She says Hi all the time. Her favorite toy is Elmo and she tells him Hi a million times a day. We are home now. Only to hope that this time will be the last. Only to hope that this shunt revision will last her a lifetime. A LONG lifetime. It is so hard to see her go through so much and see her delays, yet I feel so blessed to be a part of her life. I thank God for her everyday, and hope he continues to let her remain in our lives for a very long time. I will never take being her mom or Easton's mom for granted. They are my Gifts from God. They are my heart outside my body walking around. I would do anything in this world for them. I can't understand why any parent wouldn't do that for their child. Be thankful when you are blessed with a healthy child, and if you happen to get blessed with a special one from above be thankful for that too. God chose me to be Alyssa's mom, and I wouldn't change that for all the other children in the world.

Baby Steps

Alyssa is doing better with her motor development. She is getting stronger in her legs and arms and some in her trunk area. She is sitting up straighter and for longer periods of time now. She has also started saying more than just Hi. She is saying Bubba for Easton and Puppa for Rowdy and BaBa for herself and her dolls. She still fights with her therapists. When they want her to do something is when she isn't going to do it come hell or high water. If they want her to move her hand a certain way she will snatch it back, and if they want her to do a certain sign she will look at them like they have grew a third eye and just smile. Yep, we are teaching her some baby sign language. She is doing very good with this, which surprised me a bit. She will do the sign for love you, mama, baby, more, and all done. I am working with her on drink and eat.
In other areas she loves swimming. She loves to get in the pool and will kick and splash as if she were crawling. She doesn't care if it is in her eyes or splashed on her head or even when Bubba does a cannonball. She will just laugh and keep splashing. I really think it is wonderful for her, and somewhat very theraputic.
Her shunt has continued to work, however we did have to have a revision of her tubing into her brain on May 2nd. That went pretty well. We went in on a Monday morning around 4 am. She had been showing some signs of irritability. Not really anything else. She was still eating and drinking her bottle, but she just wasn't herself. I don't know how to explain to anyone how we knew we just did. I mean there has been times we weren't sure, but this time we knew. She woke up running a fever and we headed to LeBonheur right away. After a series of shunt testing the neurosurgeon team confirmed that it was her shunt. Dr. Stephanie Einhaus did the surgery again, and as far as I am concerned is the best. She is a wonderful doctor and person. Before her surgeries she will come talk to you in the holding room and explain everything to you. Then she will ask you if you would like to pray. That is amazing, when so many people in this world might get offended at such a gesture, she still asks. Of course that means the world to us that a God-believing woman is the one trying and hopefully succeeding in saving our little girls life.
We caught the malfunction in record timing and no further damage occured. Alyssa was back to her old self again within a few days, and continues to improve daily.
This past Thursday we did take her for an MRI. The neurologist, Dr. McVicar, of the UT Medical group at LeBonheur, suggested for her to have at one year of age. So off we went. They had to sedate her. That was a little aggravating since that meant an IV. Alyssa has small veins and is really hard to get a line in, but this time the nurse that done it only took twice to get it. I complimented her highly. We still haven't gotten any results because the neurologist was out of town this week. I am to call Monday or Tuesday of next week. Pray for good results.
I want to mention a website that is trying to do a good thing for children with special needs. http://a4cwsn.com/ipads-in-50-states/ is trying to raise money for special needs children to get an ipad to help them with therapy. Also want to mention my page for donations to the hydrocephalus association. http://walk4hydro.kintera.org/faf/donorReg/donorPledge.asp?ievent=477217&lis=0&kntae477217=9EB850B7D096404EA7DC52670116C5AA. Please consider donating a few dollars to this cause. There is currently no cure for hydrocephalus.

Bedtime Smeztime

I wanted to share a little bit of fun time in Alyssa's life. As I have said she has Cerebral Palsy, to what extinct we still do not know, but she is still not able to sit up by herself. She can sit unassited for a minute or so not actually sit up from a laying down position. So when I lay her down in her bed at night and I know she is sleepy, she can't get up unless I let her up. So I don't have the problem of her gettin up  and me having to lay her back down numerous amounts of time before she goes to sleep. I know how it works. I had a little boy who would fight his sleep and could get up. He was crawling out of his bed at 8 months. However, Alyssa has her own way of fighting sleep. She plays with everything her short, but long, arms can reach. Rather it be my hair, her hair, her cover, her socks, her diaper, my glasses, her little pillows, and anything else she can think to grab. Usually the first thing is my hair. She lays there and I am trying to sing her to sleep, but she is grabbing my hair and pulling it. Playfully, but pulling it. I put it up in a clippy and continue to just sing. Her favorite song is 'You are my Sunshine'. Well then it will be my glasses so I have to take them off and lay them on the night stand. So now that all my stuff is without reach she starts on her stuff. The covers go first because she is raising them up looking under them. So I take them off her and let her lay without them. Little do I know this is just what she wants because now she can get to her socks. She pulls on them first to get them half way off her feet and then sticks them in her mouth to suck. She will have both of them soaking wet if I don't take them off so I do. This gives her free range of all five little piggies, which she puts in her mouth as well. She will giggle and play with her feet for a while and then she bored with that and fusses for a while wanting me to get her up. I shake my head no and say it is nite nite time. Then she shakes her head no back and grins. Now it is time she tries to take off her shorts and diaper. I have to fasten the velcro back a few times on her luvs and tell her no before she will leave it alone. So she then proceeds to play with her shirt. Up and down, up and down, she is wanting to play peek a boo. I just sit there and shake my head trying not to crack up laughing futhering her enthusiam. Then it is patty cake time. She will straightened her arms as high as she can and clap. This goes on for thirty minutes or so until she realizes nothing is going to get her back out of bed. That is when she fusses for about five minutes before falling asleep. I love these nighttimes with her. Maybe not the way others do it, but she and I have our thing. It is such a blessing to be able to watch her grow and develop differently than other babies. I wouldn't change her for anything. She is a precious, special, and caring baby. She is so different in the way she figures things out and manipulates things in her own way. She amazes me everyday. Now she is starting to give kisses and hugs and says Hi everytime she sees someone on the phone. It is so cute. She can finally sit up for longer periods at a time, and is starting to put more weight on her legs some. I think she finally realizes she has legs and they actually do something. I also think the swimming the pool is helping. She loves it and will kick her legs just as if she is crawling on the floor. I can barely hang onto her in the water. She isn't afraid of it at all, even when she gets splashed by her big brother doing cannon balls.

Thank you Lord for my family and my blessings in this life. You are trully an amazing, wonderful God!

The Things Taken for Granted

As parents we often take our children's milestones for granted. Just the simple things in a child's life as parents we may not notice. One day they are sitting up and you are so happy about it, but then they start to crawl and we say "Man, I miss the days when I didn't have to chase him around". My first born took off like a lightning bolt at ten months old across the floor. He had already mastered the stairs at a year old, and was standing in the middle of the table the day he turned thirteen months. He grew so fast I didn't think too much about his milestones.
Alyssa is having trouble meeting her milestones. She turned a year old April 21st and she still cannot sit up unsupported. She can sit for a long time supported, but will fall over witin five seconds of me or anyone letting her go. She uses her right side more than her left and still displays some infantile movements. Her legs will bear a little weight for an extremely short period of time. Then she will fuss at you because she wants to lay back down. Up until two weeks ago she couldn't raise herself up on her forearms. Now she can do this, but only when she wants to do it. She is about as hard headed as her mama. We do have her in therapy twice a week. I cannot say enough about our therapist. Both of them are amazing
people. Her Special Instructor, Mrs. Besty, comes to our home on Wednesdays. She is through Project Run. I think they are out of Oxford. Then on Friday we travel to Holly Springs for
Physical Therapy. Damie is wonderful for her. Alyssa will give her a good fuss most days, but
she stills likes Mrs. Damie. Physical Therapy is the key for any child not meeting their
milestones. Some of the signs we had when she was small was not lifting her head up when on
her tummy, and she also had really bad head control at four months old. I will try to post
some of the things that therapist go by when looking for milestones. One of the things that hindered Alyssa from meeting some of her milestones on time was that for a long while we
didn't know if she could see. At four months old the Neurosurgeon told us she didn't think
Alyssa could see at all. At six months old the Neurologist stated that she was clinically
blind. It wasn't long after this we started therapy and all of the therapist that had come in
contact with her at the time thought the same thing. Then as the days went on her sight seemed
to get better and better. It went from seeing nothing at all to having what the eye doctor
called a left vision block. This was around 10 months old. Now two months later I can't tell
that she has that anymore. She sees pretty well close up. She still has trouble far off and
sometimes right when she wakes up. I take this as a miracle from God. God has done so many amazing things in my life, and by adding Alyssa to it I can't explain how much He knew that I needed her in my taught. She has taught me a love like no other. She doesnt have a clue tha she is any different than you or I. But to me she is the strongest

The Unknown

I have a son that is now almost seven years old. His name is Matthew Easton Bogue. He has been the joy of my life and still is since May 30th, 2004. My husband, Brad, and I had been trying to have a baby for about a year when we got pregnant. Unfortunately I lost that baby at 10 weeks, but gratefully we were able to get pregnant again before even my next cycle came around, hence Easton was conceived. For about two years we decided to wait to try for another baby. Money, job, time, amongst other things made us wait. Then we finally started trying again. I got pregnant within four months. You can imagine our surprise. All was going well. We got to see the baby's heartbeat at 7 weeks along, and he/she was measuring perfect. Then a nightmare happened again. At 13 weeks I lost that baby too. We waited a few months until we were strong enough to try again. When we started trying the months kept passing and passing with no positive test. Finally I went to a new doctor and he put me on some medicine to help with my insulin resistance. After 8 months more and still no baby he put me on Clomid (a low grade fertility pill). It took five rounds of this for us to conceive. We were so thrilled yet terrified at the same time. We got to see her heartbeat at 6w5d and it was beating a strong 95 beats per minute. Then again at 7w5d and again at 8w4d. The doctor put me on progesterone hormone suppositories because mine was a little low. Then at 11 weeks I started bleeding bad. I just knew it was the nightmare all over again. I went on to the emergency room even though I knew there would be nothing they could do to stop a miscarriage. Still I wanted piece of mind or confirmation of horror so off I went. They took me into the sonogram room and squirted my abdomen with that cold jelly stuff. When the ultrasound tech put the device on my tummy and I saw that my baby still had a heartbeat I started shaking with happiness. Tears ran down my face. We finally was told that the progesterone suppositories had probably irritated my cervix causing it to bleed. After that my pregnancy went pretty well. No more major obstacles. We found out we were having a girl when I was just 15w4d along. I pretty much already knew that in my heart. I knew somehow Easton was a boy. She kept growing and doing fine the whole time. Nothing was ever on the ultrasound that anything could have been wrong, and my doctor did an ultrasound at every visit because he says they are just as fast as doing it the other way that other doctors do and they show so much more. He really is a great doctor. Then at 34 weeks I realized one day that baby girl, named Alyssa by then, wasn't moving as much as she should have been. It was a Sunday when I noticed it. So I gave it through Monday and by Tuesday movement was minimal so I called the doctor. The nurse told me to drink something sugery and lay down on my left side. So I did and Alyssa moved a bit. Still not much but I had an appointment the next morning anyway. So I went in and sure enough some how all my amniotic fluid was nearly gone. Alyssa was in distress. Now when I think back to that I wish I had went on in earlier. I had to have a C-Section on April 21st, 2010 and Alyssa Josephine Bogue, weighing 5lbs3ozs, 5w4d early, came into the world. She was beautiful, but then again what parent doesn't think that. Every baby is beautiful, I am just partial. She was breathing on her own and never had to be put on a ventilator or be given oxygen after birth. However, she wasn't sucking her bottles right. The nursery and the pediatricians threw that up to her being before 36 weeks gestation. So we went with that. Then she wasn't maintaining her body temperature. Again they said it was because she was early. To top it all off she acquired jaundice and had to be put under the billi lights for about two days. Through it all Alyssa was a trooper. She is a survivor and she is such a strong, little girl. She was in the hospital for nine days. Then after she came home we still had weekly doc visits because she was gaining weight very quickly. It would take us an hour and a half to two hours to get her to eat 2oz of formula. She just wasn't getting it down. She would quit sucking after a few minutes and just fall asleep. She couldn't hold her eyes open. We had to set a clock and make sure we fed her every two to three hours because she would get hungry or wake up hungry. This went on for three weeks. Then at her doctors appointment the third week, still not weighing even six pounds yet, her pediatrician said her head was growing faster than her body and to be on the safe side he wanted to get a CT scan done on her. So we were set up for the next morning. We never imagined that something would be wrong. Actually we didn't even know what to expect. I didn't even know what might be wrong at that time.  So we in and had the scan done at 11 am. We left the hospital and went down the road to grab a bite to eat being told that it would later on that evening before we found out the results. We got sat down at our table and Brad's phone rang. It was the pediatrician telling us to go by the hospital and get a copy of Alyssa's CT scan and come by the office and get some paper work. Then we needed to get to LeBonheur Children's Hospital as quickly as possible. Alyssa had too much spinal fluid on her brain and it was putting a lot of pressure on it. I broke down. I kept going, but I broke down inside. My mind left my head. We got to Lebonheur and that is when we found out it had a name, Hydrocephalus. Alyssa had Hydrocephalus. I didn't even know what that was. I had never even heard of it. Now it bothers me so bad that I didn't know. If I had of known more about it then I might have known what to look for earlier. Even now when  I go back and think about it all the signs were there. I know I can't change it now for me, but I want to change it for others. I want to spread awareness for that next child. Alyssa is doing well, but does have Cerebral Palsy. She is a year old now and still can't sit up or crawl and has very little strength in her muscles. But she is amazing. Simply amazing. She makes me laugh when no one can, and has a smile that can light up the room and eyes that can melt your heart. She has had to have another surgery this past week to replace the tubing from her shunt to her ventricles. She came through it with flying colors. I say this now and I will always say this. She is so much stronger than I am already, but I do wish I could take this away from her. I wish it was me and not her. I would do anything for her. She is my precious angel.

Forever

Yes, a shunt is going to possibly be forever in my beautiful baby girl's little head. My daughter, Alyssa Josephine Bogue, born April 21st, 2010, will have to battle a condition called Hydrocephalus for the rest of her life. I mean she is only 12 months old and has already had brain surgery twice. Once when she was just a month old because our pediatrician discovered why her head was growing three times faster than her body. Then a second time on May 2nd because the shunt tube that drains the fluid from her ventricles was clogged. One thing that bothers me the most is that so many people don't even know what Hydrocephalus is. I can talk about what my daughter has and I have to explain to them that Hydrocephalus is a condition where the brain doesn't drain the spinal fluid out of the ventricles. In Alyssa's case the neurologist thinks she has aquaductal stenosis. Where the small canal from the third ventricle doesn't drain down into the fourth because it is closed and didn't for some reason or another open correctly when formed. So the shunt bypasses that canal and drains the fluid for her. If it malfunctions and isn't caught and fixed quickly further brain damage can occur. You see my daughter has cerebral palsy as a result of hydrocephalus. She still can't sit up and can barely roll from her tummy to her back. She has very low muscle tone . So we definetely don't want to cause further damage to her brain. It is a constant worry that we will miss something. I don't understand why she has to endure this for her whole life, but I lean on God for that which I do not understand and let him guide my life down the path he sees is best for me. I feel like he has a plan for my daughter. She was put here for a reason and I was chosen to be her mommy for a reason also.