Always knew Joseph had a problem...

After asking the nurse at the NICU was Joseph taking his four ounces of formula without a problem and she said yes I had NO idea how complicated my life would become when Joseph came home. The hospital released Joseph, just two days off of oxygen and weighing only 4.4 pounds, home. The night he came home I fed him his four ounces and laid him on the bed. I stepped away for a few minutes to rinse out his bottle and when I came back he was blue and had quit breathing. I tried to revive him but I could not so after a moment of panic John told me to start CPR while he called 911. That was the most terrifying time in my life. That I was holding my child in my hands and he was going to die.

I was able to get him to start breathing again right before the ambulance arrived. I was able to do this by doing a combination of CPR and what you do for someone who is choking. I had NO idea why he had quit breathing! It was a long ordeal but in the end it was determined that Joseph was suffering from an extreme case of GERD. He was refluxing high enough to interfere with his breathing but not high enough to vomit.

During this time we also took Joseph to a pediatric neurologist. I was not ever fond of her because she just did not see Joseph the way I did. She kept telling me that Joseph will be fine and that he was making great improvements but I felt different. I knew Joseph was different and having severe problems but the medical people just did not seem to agree with me. I did not have time to fight this because I was trying to take care of three babies that had to be fed every three hours around the clock and then had to sit up 30 minutes afterwards to help prevent reflux.

The neurologist told us that Joseph's MRI (done when he was 14 months old) was fine. She said Joseph had microcephaly (small head) and had a small brain but it was ok because it was in proportion to his head. Then she said all of the parts of his brain where there so he was in good shape. It was not until a few weeks ago that I got the actual MRI report. So my husband and I have been thinking Joseph's brain was normal and then I read the report. The report said, "there was mild swelling in the subarachnoid space along with swelling in the lateral and fourth ventricles. This is consistent with global parenchymal volume loss. " Now if you are like me I had NO idea what this meant so I had to google the information.

What I found is that this is synonymous with brain or cerebral atrophy. There are lots of things that can cause this. Too numerous to mention. Brain atrophy though is something seen in people with multiple sclerosis, Alzheimer, and Parkinson Disease. It is also seen in people with cerebral palsy (CP). Now this is important to mention because the reason I pressed the neurologist to do the MRI when he was 14 months old was to look for something that would cause CP. I told her that when Joseph was first born he had his fists clenched shut for about 6 months or so and I thought I say signs of his eyes doing something called "sundowning". This is where the eyes want to look forward but then slowly rotate downwards towards the feet. Sundowning is a sign of neurological damage. Later Joseph did finally open his hands but then he twiddled his hands in front of his face and that was all he did for another 6 months. Joseph seemed to have no awareness of brother or sister much less my husband or myself.

The neurologist just kept putting me off and would not diagnose Joseph with CP. She insisted that Joseph would get better. She said he was behind because he is a preemie and then had so many set backs and surgeries. Again, on instinct, I knew she was lying. She gave Joseph the diagnosis of developmentally delay with hypotonia.

It has been 2 years basically since I have been trying to get Joseph the diagnosis of CP. Being diagnosed with developmental delay does little in getting Joseph the services, therapy, or equipment he needs. On July 1 I took Joseph to a pediatrician and showed him the MRI report, a letter Joseph's physical therapist wrote describing his motor issues, and had an autism specialists also go with me so she would tell the doctor Josephs other medical issues. This doctor actually listened to everything I had to say. We talked about Joseph and his development for about an hour. At the end the doctor said he would be comfortable in diagnosing Joseph with CP. I was floored! Finally, after 2 years and 15 doctors, a doctor listened and helped! The pediatrician was interested in Joseph, the whole person, and not just the "sick" parts of Joseph. Now my little boy has been medically diagnosed with CP, hypotonia, expressive apaxia, gross/fine motor delay, subglottal stenosis (narrowing), dysphagia, GERD, blindness and incontinence. The diagnosis of incontinence was given because Joseph is NO WHERE close to being potty trained and with the cerebral atrophy there is a high chance he may always be incontinent.

This is a HUGE victory for Joseph. Maybe now I can get help for him! : )

Time for a change...

It has been SO long since I have posted here. I changed the name of the blogg because I think it better reflects my life and the things that are happening. From December of 2009 to February 2010 we moved away from Huntsville, AL and headed back to Vegas. We had to move to a real ghetto area because it was all we could afford and I have to say I got a real education on what it is like to be poor!

We moved to Vegas because with the job market crash neither my husband nor I could find a job. Life was super tough! In leaving Alabama the biggest regret I have is for the children. We has physical therapy (PT) and occupational therapy (OT) for Joseph and Margaret. In moving to Vegas we lost about six months of therapy for them. Also Nevada is in such a bind financially that most if not all the special need programs have been reduced or gone.

When the children turned three they went to the local school district to be assessed for special education services. I was told Margaret is autistic, James is autistic, and Joseph is orthopediacally impaired with developmentally delayed. With the school district making these claims I am spending the summer getting my children to specialists.

The first specialist is an autism specialist. They all went to her to see if they are truly showing autistic traits. After that my mission is to try and find why Joseph has the medical issues he has. So I scheduled a visit to the pulmonologist, geneticist, urologist, orthopedic specialist, eye doctor, regular pediatrician, pediatrician that specializes in special needs children and the dentist. This is in addition to the therapy appointments and anything else that comes up. LOL

I have been able to get the children registered with the local Regional Center. Sadly, with the budget cuts there is little funding so my children are on the waiting list to get services. So who knows when we might get any services.

I will have to continue to write more as I start to catch the blogg up. There is LOTS to tell! :D

Been a LONG time since I last checked in but my personal life has been in a really bad downward spiral. I will post more about that but not right now. I have some good news to share. On September 14th Joseph crawled! I am SO happy for my little boy! It is not true crawling. He is on his elbows and puts his arms forward. Then he drags his body. I am SO happy that he has figured out a way to get around. Then on October 12th Margaret actually sat up! Yea! That was the first time! She crawls on her hands and knees. Then she stops and pushes herself up and sits on her legs. I am SO happy for her. She also continues to be a little chatterbox. She speaks the most of all the babies. James continues to be "all boy". He LOVES to take balls and to throw them around and what them bounce. It is SO cute. He is also really good about putting things away and bringing me items and saying thank you. My munchkins are the best! Must go now because they are waking up...

Out and about...

I had to take the babies out. It was a challenge because the babies are sick with a bad cold. James is suffering the worst then by a far second is Margaret. Joseph is lucky because he only has a slight stuff nose.

So I had help from my daughter in loading the babies. We had to drive about 30 miles away to have Joseph's helmet checked out. It was just a fitting check. Joseph has been wearing a helmet in the hopes of adjusting the shape of his poor little head.

I am pleased to report Joseph is now rotating with purpose to get something. I am SO happy to see him actively work to go and get a toy!

For the last 3 weeks James has been using the sign of "all done" when he is finished eating. Now that Margaret is eating too he does not understand that he can be all done but not get down from the high chair. I make he wait while Margaret is finishing her food. Margaret has to wait too sometimes but it is usually the other way around...lol.

Yesterday we went to WIC. James weighed 26lb 9oz. I was told he was at lest in the 80% in height and weight. Margaret was 16lb 15oz. She has finally reached the growth chart in height. She hit the 1%...lol. At least she is growing. :D Joseph is getting bigger but he still is not on the growth chart. My poor little guy! Sadly, I missed his weigh because I was being pested by a nurse who was curious about the babies.

Margaret and Joseph were switched to Boost 1.5 (high calorie). I will be feeding Joseph and Margaret more and more food and supplimenting the food with the Boost. I hope this works and continues to give them all the calories they need.

Picture of James in his "big boy" bed

Here is a picture of James in his "big boy" bed. This was his first night sleeping in the toddler bed and he did SO well!

Starting Over

I have written a couple of blogs chronicling the lives of my surviving quadruplets but things seem to get lost on the computer when it crashes so now I am using a public blogger. Hopefully, I will not lose my information again.

Yesterday, August 1st, one of my babies became a little boy. James slept in a toddler bed! He had escaped out of his crib a couple of time and we were worried he would hurt himself so DH and I decided to get a toddler bed.

Margaret also has escaped her bed once. I have NO idea how she managed that! She does not sit up on her own and she does not crawl properly (only army crawls). She is a MAJOR talker. She babbles a LOT but she also says a lot of words too.

Joseph can roll both directions really well. I have high hope for him and I hope to see him sitting (at least aided) in the next 3 months.

Now that I have started a blog I hope to write here more and more often. I want to remember my day-to-day life with the babies. It is SO amazing raising high order multiples! I feel very blessed by them!