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.