The Broken Finger

So we are those parents….you know the ones…..they let their kids get hurt, maybe even break a bone and don’t take them to the doctor for a week! Whoops!

Little Monkey and Big Monkey were out tossing the football a few weeks ago when Little Monkey went to catch the ball and it bent his pinky finger back. He said it hurt but kept playing. The next day it was a bit swollen and he said it hurt a little to hold his pencil at school. But he wasn’t really complaining about it. I kept meaning to have Big Monkey look at it….and kept forgetting. He looked at it one weekend when we were out camping, yup still swollen. Once we were back and it was still swollen, and had definitely been over a week since the injury, we took him in for an x-ray. (This was mostly to calm my motherly fears of it being broken as Big Monkey didn’t seem to think there was really much wrong with it or anything they could do if something was wrong.) Sure enough, it was broken. He got it buddy taped to his ring finger and referred to and Ortho to check up on it. The next day we saw the Ortho and they agreed it was broken. Treatment for his broken pinky finger was to keep it buddy taped to his ring finger and try not to fall on it/break it more. We went back this week for a check up and more x-rays. It is still broken but healing. Now we will continue to buddy tape it and go back for another x-ray in two weeks. Hopefully by then it will be healed up. Little Monkey doesn’t complain about it too much so it isn’t a huge deal at least.

So…we have our first broken bone…one part of his pinky finger. We are grateful it wasn’t more though he was kind of hoping for a cast!

The Sweetest Little Monkey

Recently Little Monkey had to go back to the genetics doctor for his PKU checkup.  He did a great job, like most times, but this time he also talked quite a bit to the dietician, nurse and doctor. The nurse let him know that this time they had a big present for him (He has gotten gifts sometimes but they were usually happy meal type toys.) but that he had to get his blood work done first. He was up for it and did a great job, no tears or anything. Little Monkette watched and seem concerned but it all went well. Little Monkey grew….very little…but he grew. He is in the 10% now for height and 5% for weight. Hey-somebody has to be at the bottom of the spectrum! We are still waiting to hear back on his blood results but I’m sure they will be good!

Once he was all done, Nurse Laura went to get his special present. It was a big puppy pillow pet! Little Monkey was so excited!! (They also brought in two happy meal type toys for Little Monkette.) Little Monkey couldn’t believe it (Heck I could hardly believe it!). They told me that they had gotten some of these pillow pets in recently and checked the schedule to see who was coming in. They saw that Little Monkey would be in soon, so they saved one for him!

He told them all thank you but later in the week we wrote Nurse Laura a thank you note. I got out paper and a pen for Little Monkey and he would tell me what he wanted to write. I helped him spell out the words but he decided everything that he wanted to write.

Working hard on his letter

Here is the letter he wrote:

Letter

In case you can’t read what he wrote, it says: Nurse Laura- Thank you My dog is henry. I got henry a collar and a tag. Thank you for my dog.   Then he signed his name on the bottom right.

And yes…he really did get Henry a collar, leash and tag. We made him a tag from some craft foam and Little Monkey used his money to go to the Dollar Tree and buy him a collar and leash. He was asking and asking me to get him one but I told him that I didn’t have money to buy that. He insisted that I did but we made a deal that he could get Henry a collar and leash if he used his money, so he did.

I’ll have to get a picture for you of Henry….I don’t have one just yet somehow!

Stitches!

WARNING!!! THERE ARE PICTURES IN THIS POST…..IF YOU HAVE ISSUES WITH BLOOD/STITCHES, THEN I WOULD RECOMMEND YOU SKIP THIS POST!

Thursday night, Big Monkey was working and the kids and I were hanging out relaxing with the pups. Since having a calm, boring night wouldn’t be any fun…Little Monkey decided to spice it up. (Okay really he didn’t, it was an accident but it certainly changed the evening.)

While playing with Little Monkette and the pups, Little Monkey ran across the room (Something he’s not supposed to do) and jumped onto the ottoman (Something he’s not supposed to do) and ended up hitting hitting his face on the marble window sill. He started screaming and then I saw it…blood and a deep gash on his cheek just under his right eye. I don’t deal well with these types of situations but I did my best. I grabbed Little Monkey, carried him to the linen closet, got a towel and told him to sit on the couch holding the washcloth to his wound. I grabbed the phone and called Big Monkey at work, no answer. I called his cell, no answer, I sent him a text telling him to call asap because we were headed to the ER for stitches. I grabbed some shoes for Little Monkey and Little Monkette and got some shoes on myself. (I was wearing gym clothes from having worked out earlier and was still so gross but it is what it is.) I put Sadie in her crate and we all got in the car.

I called my Dad to see about getting the number for Centra Care because I thought they did. Big Monkey called me back and we discussed that we could go to Centra Care and to just keep him posted. I called Centra Care but was place on hold and never picked back up  before we arrived. During the car ride, Little Monkey did great but when we went to get out he cried again. I got everyone in the building and started talking to the nurses. They got him an ice pack and then moved back quickly to a room while I was still filling out paperwork.

Before the stitches

We all sat on the stretcher and talked about what was going to happen. The doctor came in and looked at the wound. He decided that it was too deep for the glue, so we were in for some stitches. He also wanted to do an x-ray to make sure Little Monkey didn’t break anything. Big Monkey had told me this wasn’t necessary, so I called him and let him know what was going on. We decided to go ahead with the x-ray and then get the stitches. The x-rays came back okay. They don’t think that he broke anything. Little Monkey did a great job for the x-rays. In fact, much of the time we were there he was doing so well. I had some crayons in my purse (Thank goodness), so that kept Little Monkette busy coloring on the stretcher paper and putting the crayons in and out of the box. We talked about what was going to happen and how Mommy, Daddy and Mimi all had stitches before.

When it was time to get the stitches, I had to move Little Monkette over to a chair so that Little Monkey could lay down. I held onto his hands and let him know he could squeeze them if it hurt. (I think I was squeezing his hands more than he was squeezing mine.) He was a trooper. He did cry but considering the circumstances he did great. The doctor cleaned his wound and the put a piece of paper-like cloth with a hole in it on his face to focus on the area. I was standing over Little Monkey and the Doctor asked me to either move or get a mask because breathing on Little Monkey and the wound could get more bacteria in it. I decided to kneel by the stretcher and hold Little Monkey’s hands. The Doctor gave Little Monkey some novacaine and after it had a minute to take effect, he started stitching him back together. I could fully see what he was doing but Little Monkey didn’t like it. It seemed like he was stitching a lot and for a long time but in the end we only had two stitches. From the time of the accident to the time we left Centra Care was just over an hour.

After the stitches

Little Monkey was a trooper. He has been healing but he has a little bit of shiner too. We have talked about the accident many times since it happened and hopefully he has learned his lesson about running in the house and jumping on the furniture. Thankful that he just needed a few stitches!

Little Monkey Update

We heard back on Little Monkey’s blood test finally. The results were what we expected, not what we wanted. He had a blood phe level of 9.6. This is lower than the last reading but still not acceptable. We have stopped the Kuvan and they are calling him a non-responder. Part of me is bummed about the outcome but at least we know. As Amy said one day, when Little Monkey was born, they didn’t even have Kuvan as an option. It has been almost five years…and in another five years there might be another option.

Little Monkey Update

We have some new information on Little Monkey, so I thought I would share it with everyone.

First up, our very first parent teacher conference. During a teacher work day this week, the kids and I headed up to the school to meet with Little Monkey’s teacher. This was a standard conference and we went over his progress report and test grade. Yes, a test! It is actually the first time they gave this test to the pre-k kids, so they didn’t know what to really expect. His teacher said that there were many things on the test that she thought we asking a bit too much of four year olds! Little Monkey got 50% or less in all four categories. We are hoping that after a year of pre-k, he will have at least improved scores! His teacher said that he does a good job in class and all we really need to work on is some of his letters and the sounds letters make. She asked if I had any questions, but I didn’t. I wondered if I should! Whoops! We discussed more about Little Monkey’s PKU and the upcoming food related holidays and activities.

We got Little Monkey’s most recent blood draw results back on Monday. They were not good. A phe level of 11.7, my heart sank a little and then wanted to blame his recent craziness to the elevated phe level. His dietitian decided that we should have another blood draw done yesterday to see if the 11.7 was a fluke. We then reduced his phe intake by 10 mg per day. We will wait to see the results of this blood draw. If it is still elevated, we will take him off the Kuvan and go back to his original level before Kuvan (230 mg of phe per day). I am a bit grateful that we will be done with the medication most likely. We haven’t been able to raise his daily intake to anything that would be worth staying on the medication. At least we have tried it and will know if it does or doesn’t work. Who knows, maybe when he decides to eat more food, there will be a new therapy or drug or something that will allow him to eat more foods. We will find out soon if we are really done with the Kuvan or not.

That is what’s new with Little Monkey. Other than that, he just loves going to school and playing outside.

Bugging Kind of Day

Yesterday while Little Monkey was staying home because of a cough, I found a problem. I went to shower and wash my head really well (because it had been itchy) and found a creature. Not cool. After my shower, I checked Little Monkey’s head and found live creatures and nits in his head. My day went from not so great to definitely bad. I was freaking out! After some phone calls, we headed to the store to get some lice medicine to take care of the issue. We started washing EVERYTHING. GrandMom came over after work to help me out with treating my head too. It was a hassle but I’m hoping that we have taken care of the problem.

Little Monkey went from this look:

Shaggy Hair Boy

To this look:

Shaved Head Boy

Good news is that he doesn’t seem to mind the short hair cut. I like his hair a bit longer, but this made it really easy to treat the bugs. Hopefully this will be our first and last bout with lice with Little Monkey. I’m sure it won’t be….since Little Monkette will probably get them at some point too. Hopefully we got them all and they don’t come back though for a really long time.

St. Baldrick’s

Have you ever heard of St Baldrick’s? I hadn’t heard of  it before Big Monkey came home and told me that he was growing his hair out. This is a big deal, as Big Monkey normally shaves his head every other day or so! He decided a few weeks ago to grow his hair out and it has been driving him crazy. Then on October 23rd, he will shave his head to raise money for St. Baldrick’s. St. Baldrick’s raises money for childhood cancer research.

Big Monkey has a goal of just $250 but so far he has raised $0. Yes, you read that right, ZERO. He needs your help!!! He would like to raise $250 before the event on October 23rd.

My request is that you give money so that Big Monkey DOESN’T shave his head before the event!! It is REALLY killing him to keep growing his hair. He is so used to not having any hair that he is having a hard time not shaving it. On average, I have forty readers come to my homepage each day. (This does not include people who come straight to specific posts from searching or link parties.) If each of you forty people gave just $2, we’d already be up to $80! I know this probably isn’t likely, but I need Big Monkey to NOT shave his head until it is time!! Let’s raise some money for childhood cancer research and then Big Monkey can go back to his normal bald head!

Click HERE for Big Monkey’s link to donate. You can donate online or call 888-899-2253 and give them his participant id: P-412236.

 

 

Little Monkey Medical Update

Today is day zero. Day zero out of who knows how many in a drug trial for Little Monkey. We are trying out Kuvan to see if it will allow him to liberate his diet a little bit while still keeping low phe levels.

To start out, we had to go to Quest for a blood draw. Our lab orders didn’t make it yet but I was able to get the doctor’s office to fax over a copy of the orders to Quest. Quest was VERY busy this morning. I was very thankful to have an appointment! The nurses there always freak out that it will take two nurses to draw his blood. I had to assure them that was not the case and that Little Monkey is quite the pro at this process. He was a little nervous today, but I think it was because this is the first nurse he has had at Quest that was black. (His nurse since he was 10 days old is black and he has been nervous/scared of black women ever since.) He did a great job though. No tears, just stuck his arm out and waited to be finished.

We got home and crushed his pills and he drank them right down in his ‘juice.’ I filled his juice back up with more juice for the day and he sat down for some breakfast. If only I could get him to eat!!!! One day he will want to eat I’m sure of it! Tomorrow morning we will do the same thing, go to Quest for a blood draw and then back home to take his medicine. We’ll see how things go!

Little Monkey Medical Update

Little Monkey with a postcard from his VPK teachers.

I told you over here that Little Monkey was getting ready to start a drug trial hopefully. Well, he had the next blood draw done and his phe level actually went down to 2.5. Not much of a change from 2.6 but not the direction we wanted his levels to go in order to start the drug trial.

After much discussion with the drug company and our insurance, the doctors have decided that we are not going to do things their way but that we will do the drug trial as they want. The insurance doesn’t want to cover the dosage, so they want us to do a trial at a lower dose to see if he responds. There is a chance the he will not respond on the lower dose but may respond to the higher dose. The current plan is to just try the higher normal dose and see what happens. If he doesn’t respond, we are done. If he does respond, they will back him down on the dose to see the difference in his response to appease the insurance company.

Since his level went down, we are raising his daily phe allowance by 15mg of phe a day and in two weeks we will do another blood draw. Based on everything we have done already, this should show an increase in his phe, allowing us to start the drug trial. It should not raise his level to an unsafe range but just to a point that we will be able to see if he does respond to the drug. Hopefully we will get to start this soon and see if we even respond. I am ready to just know and then we can handle moving on from there!

Little Monkette Health Update

Happy Girl!

Little Monkette is now nine months old! This means she got to go back to the doctor for a well visit. Little Monkette is now 27 inches tall and weighs a whopping 17 pounds, 15.75 ounces! She ended up getting one shot, which she of course did NOT like. Everything looks great on her and she is doing well. The doctor asked if she was eating table food, which she is not. He let me know that she can start eating anything as long as it won’t cause her to choke. I swear I feel like a new mom with her because I had Little Monkey’s dietitian telling me what to feed him and when! I picked up some meat baby food for her to try and we are adding in more puffs and trying out Cheerios. She likes the puffs but is not yet too excited about the Cheerios. Little Monkette has two teeth on the bottom and is working on getting four in up top! She crawls pretty quickly and is pulling up on furniture and walking around it as she holds on. She can stand for a short time not holding onto anything. She is not yet walking but can walk with a push toy or the laundry basket. I’m sure she will have that figured out soon too! She doesn’t have to go back to the doctor until after her first birthday! Ahhh! How crazy is that? I can hardly believe that she is almost a year old.