As the year ends and the new year rolls around I look back and breathe. I made it through a really rough year! I am amazed that I am able to put things into thoughts, since there is so much going on in my head. So as I try to put my thoughts down please forgive me of my randomness and jumping all over.
I had to take Rhett into the doctors before Christmas his breathing was increased, he maxed out on his oxygen at 4 liters on his tank and 5 liters on his machine at home, and even with the breathing treatment it didn't help much. The doctor decided to put him on antibiotics we are hoping that the antibiotics help kill whatever is making him struggle more than normal.
Found out while I had Rhett at the doctors office that Nikole had or has a bladder infection again. I was frustrated since the test was done in November and I never heard anything. Normally isn't it: "No news is good news"? Whatever I plan on following up to the point of harassment if this continues since the doctor wasn't sure how they even missed that to begin with. She just finished her antibiotics and I pray that will be the end but I highly doubt that since we all know that when you are in school you don't have the freedom to use the bathroom as you like. Well she does because of a health care plan, but like she actually will use that privilege. Yeah Right!! At least the pills she took were horse sized and that usually dissuades her from wanting to take them again. LOL!!
Hi-ho hi-ho back to the doctors we go!
Gavin was lucky to get sick the weekend after Christmas if being sick is lucky. Vomiting most the day Saturday and coughing like crazy through the weekend. Lucky child has a virus and we have to pray it goes away so he doesn't get anything else on top of this to share with his siblings.
Dylan was also a lucky little man and got an ear infection over the weekend too! He is now on antibiotics and I am praying it goes away with this medicine so I don't have to take him back to the doctors for a while. I mean I like the doctor and all but gosh it would be nice not to see him on a monthly basis. At least after some ibuprofen and some numbing drops he was able to sleep through the night Saturday and cough like crazy the rest of the weekend.
The last visit to the doctors this year thanks to Gavin and Dylan. They certainly know how to send off the year and welcome a new year. Ok boys pull it together so we can get through the month of January without making unscheduled doctor visits. I think I can, I think I can....
As I look forward to a new year I am planning on changing my outlook and I am planning on accomplishing so much more. I would love to go into details but it will have to be a surprise, since I haven't set it up yet and I am not in the thick of it yet. I can't wait to get started! I am almost excited seeing what I can do to make this next year so much better. One goal I have is to blog every week since things get a little busy, but I am planning on at least once a week updating the blog so that way I can keep you informed on my progress and I hope that by doing so encourages me to be better.
I have felt like this often and I deal with it almost daily. Don't press your luck if you are dealing with me.
Don't underestimate me!
I will come out on top!!!
Seriously? What I thought
was a kind gesture a few years ago turned into a knife into the heart. How come people think that it is ok for them
to be judgmental towards others, by their standards? I am by no means perfect but I try really
hard not to judge others if I have not walked in their shoes. I know what it feels like to be judged and it
isn’t pleasant. I look at it this way…. Is
it my place to be critical or disapproving towards others? No!!! Why be negative
towards others when you have yourself to take care of? I just don’t understand why people would what
to be hypercritical and condemnatory towards their fellow men?!?!?! Maybe it is just me, but I think that is just
wrong.
Yes I can use all the FRIENDS I can get.
After hearing that the help I got on my birthday a few years
ago was only to see how I am doing, and they went and told people that I did
nothing but sit there, when I was sorting laundry for everyone in the house?!?!?! REALLY????
Do they have any idea what I face on a daily basis???? NO!!!! Do they comprehend the drama that is brought
into my house due to medical strain, teenagers, and addictions????? NO, THEY DON’T HAVE A CLUE!!!!!!! Why did they say something so
damaging??? What would cause them to say
that???? I don’t think that even stopped
to consider how it would affect me and my family. I often wonder if people are so worried about
others to not even think that what they are saying is going to have a damaging
effect on anyone. Well they couldn’t be
more wrong!!! I don’t need people like
that in my life. I have too much I have
to deal with and I choose to not deal with that!!!
Please be more understanding, and if you can't you deal with it, everyone has problems.
When you are dealing with so much that your mind never stops
running then you might be able to give your opinion but if it is degrading to
others don’t bother opening your mouth.
Keep that stuff to yourself. Work
it out in your heart since there is going to be no good coming from it if you
share it with others.
Yes this is easier said than done. It is hard work and you need to give people credit for facing the problems that they have and not allowing their lives get swept away.
First I have to apologize... I totally went on a rant last post and I feel horrible about it. I just needed to get it all out. I hope that I have not hurt anyone with my words and thoughts. I have learned that we are all entitled to our feelings and we need to have a chance to feel them. I am still learning how to feel everything I need to in order to get better. I am not here to judge people and I hope that no one is out there judging me, but if they do that is their problem and they will have to deal with it. I am not here to make people feel bad for me and my family, but I need to get information out to family that live far away and often times they are tied to how I am dealing with it. I feel like I have been doing my best but I know that I far from perfect. Again I am sorry for going off on a rant.
The bathroom is almost finished. We have worked hard trying to get it to the point that we have a working toilet and shower. I can say I am grateful for the out pouring from people that have been willing to help us. I know that by Saturday our bathroom will be back to fully functional!!! I will post some pictures when it is complete, so you can see from beginning to end. I am excited to show you all the pictures that I have taken through this whole process but I am saving the pictures until it is finished so that way I didn't feel discouraged about how long it was taking.
It all
started as an oh no and turned into a disaster.
Our toilet
was leaking into our basement and destroying the floor in the process. So we decided that we had to do something and
that meant pulling out the leaking toilet and repair the damaged floor and put
new floor and toilet down. (FYI if you ever redo a bathroom you might want to
keep in mind that it would be helpful to have a second bathroom.) Oh as we were pulling things out like the
vanity and the toilet we were sad to see that there was so much more damage
than expected. We had to take the tub
out in order to go under that to make sure we got all the bad wood out. It was disheartening to see just how much we
were really going to have to do in order to make the bathroom decent
again.
Gratefully my parents have been
willing and able to help me by letting all of my kids stay with them. My parents are the best!!! They get all my kids up and out the door. My
dad even takes Rhett and Dylan to school since they go to schools that are a
long ways away and the buses only pick up them up at my house. My mom takes Nikole and Gavin to school. It
helps completely that she works at the school that Gavin attends.
If this
couldn’t be worse we just add to it.
We
pulled everything out Saturday and Sunday and by Wednesday we still didn’t have
a floor. After a rough weekend without
kids and a bathroom, since this is our only bathroom right now, I was grateful
for the week to start. As I was headed
out of the house Monday morning I get a call from a debt collector on my cell
phone for a $47 bill from IHC Homecare Bountiful. I was in tears! I couldn’t even understand why all this was
happening to my family. It would be
different if I didn’t have to deal with all the multiple thing that I have to
continually juggle. So after a day and
talking to my husband about bills that we need to pay, I called IHC. Let’s just say some people were more helpful
than others. I finally got in touch with
a manager over accounts at IHC and the financial assistants. She was downright mean! I tried to explain to her that we are really
struggling and to be getting multiple bills and when they all cover each other
it make it really hard to keep track of them all. She told me that I should make a spreadsheet
and good luck. I tried to tell her that
I get bills from several places that are all on payment plans, not including
the major payment plan for my two surgeries and Rhett one surgery. I informed her that because I work and my
husband works we don’t qualify for help from anywhere. We own a duplex that we rent out and it covers the mortgage so my boys are not covered by Medicaid and they won’t be
because of that. I let her know that we have already gotten help once this year with medical bills for the boys from Angel's Hands Foundation
I have
calculated that I get a bill from the OB, IHC homecare Bountiful, IHC homecare
SLC, IHC clinic, U of U, Neurology learning and behavior, orthodontist, and Anesthesiologist
for my surgeries and the boys. Yep you counted right that is at least 8 bills because of the multiple bills that I get from IHC. That is several
payment plans and payments every month.
When I told her that we have met our out of pocket max (which is $8000)
and starting in January it is going to go back to $0 and we will have to start
all over with everything. Those payment
plans are just going to increase. Right
now our big payment plan from the hospitals are about $4000 and the payments
are about $160 every month. With all
those other bills it is at the minimum of $25 every month. But there are at least 8 bills listed so I
would be paying $200 for those 8 other bills plus $160 that makes it $360 every
month. Oh and if any other balances are
added to the balance that we have now they are going to increase the payment in
order to pay it off in 6-12 months. Not included in this is the orthodontist bill. I told them that I will pay them when I can and they are great at working with me on that.
I tried to
tell this manager on the phone but I get this response, ‘Well even if they were
all on the payment plan we would have the payments really high in order to pay
it off in 6-12 months’. After talking with this woman on the phone I was almost
in tears. She said well sorry we cannot
help you.
At that
point I was trying so hard not to just break down and cry. It made me want to regret having my
kids. HOW DARE THAT WOMAN DO THAT TO
ME!!!!! My kids are treasures and should
be cherished not regretted. Why would
she do something like that? I have not
eaten in days I just feel sick to my stomach.
I thought
about apologizing to the woman that I talk to saying…. “I am so sorry that I
gave birth to my children who have medical needs and will have to fight to pay
the medical bills. I know that if I had
adopted them they would always be covered by Medicaid.” Just writing this today I chocked down some
instant breakfast praying that it stays down.
This whole situation is too much. I need help and I am not even sure where to
go for help. Today- I am still not back to "normal" if that is what you call it. I can eat but not lots and not often. My favorite food that doesn't make me sick is sushi. LOL! I know land locked state and that is a favorite. My bathroom is still nonexistent. We are barely hanging on with all the money issues that we have. I have had to put this whole bathroom on a credit card, I mean heck let me check my pockets do I have $4000 to fix everything that needed to be fixed in my bathroom? Uh no. So in order to have a toilet and a tub working that is what was needed. At least I can see that we might have a working bathroom before next weekend which would be the best thing ever after having none for over a month. I am still unsure how I feel about so much. I am working on trying to figure out how I feel and why I feel that way. I think that will take sometime, and that it is going to be hard for me since I am not use to doing that very much. Is everything in life hard? I would hope not. I am so grateful for Crystal and Jared Hess that came over to my house and helped with the tub taking out business and the tiling of the wall business. They are a huge blessing!!! Thank you ever so much!!!!!!Crystal has been getting my boys after school and taking them to my parent house for me because I can't and the buses don't bus them there. I believe that it is stressful for her to do that for me but I am so grateful. It is now almost December and my mom called to find out what we are getting the kids for Christmas. I told her that I am not getting anything. I just put a bathroom in my house that is all I can do for this year. She asked if my spouse was going to get anything. I told her that I didn't know. I think she is frustrated too. I completely understand. I was thinking the other day that it is a miracle that I am as sane as I am right now. There is so much going on in my life that could cause me to lose it completely but thankfully to the music I am listening to it is somehow keeping me grounded. I know you will think it is weird but it is what is holding me together right now. Thank you Kim Hyun-Joong and SS501(Triple S)!!I have been listening over and over. Even if it is the same songs and the fact that I don't understand everything being said, but it is so relaxing to me. His music and their music have touched something in me that I didn't even know about until I heard it. This is just one of the many that I love to hear. I know Jan Hernandez would crack up reading this, but she is introduced me to this music. Thanks Jan!!! :)
Just the other day when I took Rhett to the Cardiologist he did a 6 minute walk test and came out with really high blood pressure. So now the cardiologist is referring him to a Nephrology (the branch of medical science that deals with the kidney) doctor. Now we have another doctor to add to the list of lists. But the doctor was wondering if there is something going on with his kidneys, since the main reason for having high blood pressure in children is linked to the kidneys. So we are having lab work done the beginning of December and the middle of December we are seeing the kidney doctor. But what I don't understand is that if it says something about this syndrome affecting the kidneys, why hasn't anyone wanted to check it out before? Oh wait maybe that is because they just found out what the boys have in March. Even so it says so right there in print: Short Rib-Polydactyly Syndrome Type 2 An autosomal recessive lethal skeletal dysplasia (OMIM:263520) characterised by markedly short ribs, short limbs, polydactyly and multiple anomalies including a narrow thorax with hypoplastic lungs, extreme polysyndactyly, dysproportionate dwarfism, median cleft lip and palate a ventricular septal defect and cystic Kidneys. Imaging Shortened and horizontal ribs, squared scapulae and elevated clavicles with lateral kinking, normal spine and pelvis configuration, and shortening of the bones of all four extremities, with extreme reduction of tibial bone length. Molecular pathology Defects in NEK1, which encodes and enzyme thought to have a role in controlling meiosis and cilia assembly, cause short rib- polydactyly syndrome type 2.
All of that is found here: http://medical-dictionary.thefreedictionary.com/short+rib-polydactyly+syndrome,+Majewski+type But now I question it because everywhere I look the infants have died at birth or right after. I understand that they told me that Rhett would die after he was born, but I refused to accept that since I was so very sick with him. But I figured out that the chances of having a child with SRPS are .0075%. So that got me thinking and I am not wondering "HOW THE HECK I ENDED UP WITH TWO?" according to the doctors. If it is really that rare how did that happen and how are they still alive? I will be in contact with the genetics office this week to get the boys in to discuss this whole thing. The appointment will probably be months away because that is how doctors roll. I am seriously thinking of starting a fundraiser to help cover the medical costs that we have. My sister said she would help..... I wonder. I think that would help me destress, even if it a little, and I think that might help Rhett not try to turn blue to because he doesn't want to pay for oxygen. HAHAHA! You would think it is free. I told him that I didn't have to pay for it since he was changing tanks often. But in my opinion he shouldn't have to worry about how much money his medical needs cost.
I need to apologize.... I have been having a hard time getting on the computer and blogging like I used to do. I feel bad because I feel like it makes my posts forever long. I will try to keep this post short and sweet but no guarantee.
Rhett had his follow up with the neurosurgeon the end of September and there is no change in fluid. Since they put in the slowest draining tube they didn't expect to see a change. We were told to go to the eye doctor and see if he says anything. We are seeing the eye doctor this next week. Not looking forward to that since he says that there is extreme pain behind his eye(s). I can't remember if it was on eye that he is having pain with or if it is both of them. Sigh! He is struggling in school and failing classes and I have no idea how to encourage him to do better, or help him. He just has no desire to do anything once he comes home. If you have any suggestions that would be awesome! He is having a harder time breathing and I noticed that on his trip down to Cedar City for the Shakespearean competition. The nurse also noticed and so did the teachers that went with us. I will have to post about the Shakespearean competition in another post hopefully soon. Maybe I can do that this next week since I might have time next week.
Gavin has been acting out more often then he was since summer. Not sure what to do with him. He got into trouble for sliding discs around on a field trip and for not listening to the person that drops him off at home. :( I am not sure what to do with him. I am so lost! I am concerned that something will happen to him since I had to contact the cops after dropping him off at school one day because of a man that was exposing himself walking around the neighborhood while the kids are walking to school. Seriously stupid man! Oh well Gavin is going to be walking again and I just pray that nothing happens to him.
Nikole is in the school musical and is so excited! She also had an amazing term at school and was able to make it onto the warrior club. Warrior club is for kids at the end of term that are getting a 3.2 or higher. She had all A and A- except for one class and that one class she had a C-. Go figure! She is in after school programs like there is no tomorrow. Everyday she is there after school. I have told her that it is her responsibility to talk to her teachers and do what she can to keep all the A's that she has now. Right now she is selling(well taking donations) for tickets. They are having a competition between all the kids in the musical to see who can "sell" the most tickets. They are only a $1 donation per ticket. If you would be interested coming to see Nikole in the "High School Musical Jr" please let me know. She would love to "sell" the most tickets.
Dylan got glasses and is still so funny. He really enjoys playing with his eyebrows and shows me all the time and asks me if I remember. He is the best at coming home from school and sitting down and doing homework. Grateful that there isn't much fighting to get him to do his homework done. Just found out that Dylan is suppose to do a science project and I am clueless on how to help a 1st grader do a science project since he is suppose to do it on his own mostly. Oh well we will see if he ends up failing 1st grade for not doing a science project. HAHAHA!!!
Things for me have been really stressful, and I haven't blogged about it because I am not sure what to say. Plus I feel like I would be complaining if I blogged about it. So maybe the next post I can go into detail about what is going on for me other then the kids.
We met with the Neurosurgeon on July 22nd and he went over what they found that there was water on the brain. He wasn't sure what to do until we see the eye doctor since other then headaches he doesn't have any symptoms of the hydrocephalus. So we set up an eye appointment in less than 2 weeks on the 9th of August. So then it was just a sit and wait for the appointment. As we wait we work on getting our house put in order and getting Nikole ready for a trip with family. So we see the eye doctor on Friday(8-9-14) and he was easy going until he looked in Rhett's eyes and instantly told them to page Dr Kestle(Neurosurgeon) and that there was swollen optic nerves. He looked at me and said set up an appointment to come back three months to check his eyes again and have the hydrocephalus taken care, and then again asked someone to page Dr Kestle and walked away. I went down to the office area to see if I could just talk to Dr Kestle before I left the building. He wasn't there so we left and I waited for the phone call from the doctor. Didn't get a phone call Friday, so then it was nail biting through the whole weekend, wondering what the heck was going on. Monday came and I was looking at the phone waiting again. Didn't get a call again! :( So by Tuesday I was stressed to say to say the least. I knew we had an appointment in the afternoon because I set it up when I went to his office to talk with him on Friday. I figured I would get a few things done before the appointment and then just ask why I didn't get a phone call when I see him that afternoon. So....... (What would you do?) I get a call at 9:30 Tuesday(8-12-14) morning telling me that Rhett was on the schedule for the OR Wednesday(8-13-14)! We hadn't talked to the doctors so it was like we were in the dark. She said that she didn't want me to get a call from the hospital before I knew. Later that day around noon the doctor called me and said he would see us tomorrow. I told him that I wasn't going to have to explain this to Rhett on my own and that Rhett does have a voice and he needs to voice his opinion and be heard. He also needs to understand why the surgery is set for tomorrow and answer all the questions that he has. So he better plan on seeing us at 3:15pm at our time of appointment so he can go over everything with Rhett. Apparently when we finally saw the doctor that afternoon he informed us that the eye doctor saw swelling optic nerves and some areas that were hemorrhaging. He said that he couldn't say go to school don't worry about it and come back when it is Christmas break. He said that consulting with all the other neurosurgeons that they would treat the hydrocephalus. He said he would not wait until Christmas break to have the surgery. It didn't have to be Wednesday but it should be in a few weeks. We asked questions like crazy and made sure Rhett understood. We gave him the option to have the surgery Wednesday or a different day in a few weeks. He was ok having surgery the on Wednesday that way he could have it before school started. Here is the before surgery pictures.
I know it is blurry but the grey butterfly in the middle of his brain is the water and it is three times larger than it should be, causing pressure to build in his head.
This is a clear picture of the side view and as you can see the water is not draining.
So this morning we headed out he is fine and happy. Talked to the doctors when we got there and then was taken back almost as soon as we got there, since they were running ahead of schedule and they were all waiting for him. He was the star today!!!
First time choosing to walk to the OR with the anesthesiologist.
The oxygen is too heavy for her to carry. :) Daddy taking a picture of the mark on his head made by the doctor.
My favorite picture!!! He is growing up too fast!!!
Giving hugs before going off on his own into the OR.
My brave boy! Ready or not.
So Dr Kestle (who by the way is an great doctor) went on the right side of his head near the top front of the head to stick the smallest draining tube they have into the water through the brain and then run the tube down the inside of the body behind the ear down to the abdomen area. When we met with the doctor after surgery and before we saw Rhett, he said that there was an extreme amount of pressure built up. When he put the tube in fluid shot out in a stream which is not uncommon but.... most of the time it drips according to the doctor. He was grateful that we didn't wait and do the surgery at a later time. We were both able to go see Rhett in the recovery room. It used to just be one person at a time, now it is up to two! :) Yeah!!
In recovery. I asked him if I could take a picture for his sister and he said yes. I got him to smile!! Ok I guess it was his sister that got him to smile, but I am totally taking credit for it.
Rhett not enjoying seeing his intubation tube. Told us that we were not going to keep it. So of course I take a picture so I can keep it without actually having it. HAHAHA!
He is just relaxing picking out a movie to watch. You can see his three bandages. Top of his head, behind his ear, and near his belly botton.
Looking down on him and you can still see the bandages.
He will hopefully be up and moving better by tomorrow. He says he feels bruised along the right side of his body where the surgery was and that his whole abdomen feel sore.
I will keep everyone as updated as I can, but this has been a whirl wind of a ride for us. This whole thing was also very unexpected since this was only discovered July 16th by MRI. That was less than a month ago!
Oh how I wish we could have stayed at the park with Angel's Hand Foundation all day! It was fun to see all the people and see all the cars and motorcycles. But with the air quality as bad as it is and the heat it was just too much for Rhett and Dylan. Rhett and Dylan were starting to over heat with ice and with cold water and shade. There was nothing that I could do about the air quality but Rhett so wanted to go, even though he had spent the night in the hospital for a sleep study. After a restless night sleep and early morning we went home and got ready to go even though we left late. We got there and there was a ton of cars and I pushed Rhett in the wheelchair and Nikole pushed Dylan in the stroller. I love the support I feel from the families and friends of Angel's Hand Foundation. It is nice to know that there are others that struggle with medical problems too. No they don't have the same medical problems that we have in our house but they can understand the toll that it takes on the kids and families. I am so very grateful to Todd for introducing me and my family to Angel's Hand Foundation. We have been with them for quite a while and we love being able to make memories while we have time to make them. It is nice to have good memories while we struggle through the rough times since we seem to have several rough times. For those families like mine we cannot afford to do fun things with our families. We struggle with so much as it is, I am beyond grateful for Angel's Hand Foundation and the fun things that they are able to pull together for us. My kids look forward to being able to spend time doing fun things instead of always being at the doctors office or stuck inside.Thank you so much for everything that you do for our family Mark and the Angel's Hand Foundation family!
We went to the air show they had at Hill Air Force Base the last weekend of June. It was really hot but we enjoyed our time there. I was able to nab some awesome pictures. Proud moment here. :) Here a just a few of them.
Yes 79 pictures are just a few. LOL!!
The next week was the week of the 4th of July, it started like normal but with more stress. I am not sure how to describe it but something was really bothering me and I couldn't place it. By Wednesday I was on pins and needles. I had to take 3 kids to the doctors and felt like I was at my limit. I ended up snapping or having a breakdown however you call it, before I even left my house for the doctor’s office. As I drove to the doctor’s office I was in a
daze. I sat there and tried to listen to
the doctor as they would speak to me, but I honestly don’t remember what they
talked about. That night I took the kids to Fantasy Con with Angel Hand's Foundation. The kids really enjoyed it but mostly the snakes. Ewww!!! I gave Nikole and Gavin the camera so that way I could push Rhett in the wheel chair or Dylan in the stroller. Here is some of their handy work with the camera.
I know some of those pictures are blurry but the kids enjoyed taking the pictures.
Dylan was vomiting the whole day of the 4th so we stayed home and didn't even do anything. I took Rhett in to the lab for a blood draw to find out why he is having these headaches. We found out Rhett had higher levels of CO and a lower blood count. Out of all of that I was really stressed and needed to just stop doing everything. Having this breakdown was a wake up call for me and my family. I cannot do everything alone. I need help and everyone in my house needs to step up and help. Back to the week of the 4th... trying to get my house under control and get everyone healthy. As I am watching Rhett take a lot of medicine to help combat these headaches that he dealing with every day. In my gut I feel like something is wrong, there is something going on that I cannot fix and that he needs more then just iron to help solve the problem. So the following week I contact the doctor again and let him know that Rhett has still be having these headaches. He said he was going to look into insurance to make sure we were not left holding the huge bill that usually follows the major diagnosis around. As I struggle to get Nikole ready for girls camp and making sure all the kids I am to care for are ok and well. Then Wednesday the 9th the youth were going boating in the afternoon. Rhett really wanted to go and I still hadn't heard from the doctor and since I had all my kids I decided I would take them and just keep an eye on Dylan and Gavin since Nikole and Rhett are part of the youth group. We went to the lake and I got a few pictures.
After the lake visit we decided that we will take the kids fishing with their cousins. The kids were so excited and had a blast! Here are some of the pictures that I had taken since I was the only one that wasn't having to run after a little baby. This fishing trip was Saturday the 12th of July, and Nikole still isn't packed for girls camp! At least we can do this before
Since I had not heard from the doctor about the tests they wanted to do I had to call the doctor and find out what the plan was. He said that he had sent in orders for a MRI and a sleep study. So I called to set up the MRI and sleep study. I set up the MRI Wednesday after the appointment with the pediatrician. So Monday morning I sent Nikole off to girls camp and prayed that she stayed safe. Wednesday came I and I took Gavin to counseling where he fell asleep. LOL!!! After that my husband and I met with the doctor to go over the paper for life sustaining treatment for Rhett, just in case something happens while he is at school or out in the community. After that We went and picked up the boys from grandma and grandpa's house and headed to the hospital for the MRI.
We were the only ones there and grateful that we were all together. We left him with the tech and went to the waiting room. The boys and daddy went first since I was still feeling out the paper work. As I was sitting there by myself with the technician after Rhett was already in the room being scanned just a little to make sure he was int he right spot and such. I looked up as I was trying to remember all the medicine that he is taking and as I looked up something caught my eye. I looked at the screen of the computer that she was using for Rhett's scan and saw this pretty good size white blob like thing. I know that wasn't the brain, since I have seen scans before. My heart sank before the tech sent me on my way after I finished the paper work. As I sat there with the other boys and my husband my mind was blank. We didn't really talk we just sat there and watched the other boys play. After 2 or 3 of us used the bathroom while waiting a doctor came out and asked if we were Rhett's parents. When we said yes he looked at us and said, "Rhett has hydrocephalus. It is quite a bit so it might have been growing over the years. You need to see a Neurosurgeon. It doesn't have to be tonight but it should be sometime soon." As I sat there and listened my heart dropped I know what this means for Rhett. I don't think he knew or anyone else, but I have been around lots of medical things and I have researched lots when I have come across things that I don't understand. So I talked to the doctor on Thursday and he called to let me know what the results were and to let me know what needs to happen. He called me back about an hour later to let me know that he had set up an appointment with a Neurosurgeon for us since he thinks Rhett needs to be seen earlier than later. We have an appointment soon. I will have more info soon and will update sooner.
