Keeping my nose above water.

That is how I have felt this week. I've been just trying to ride the waves, and trying to keep my nose above the water until the storm is over. I think I've done quite well. I'm so proud of myself. Yesterday I spent 5 hours straight making phone calls to arrange appointments and ask questions. I think I accomplished more yesterday than I have in the last couple of months. Although my brain felt totally melted after, I have quite the sense of accomplishment, plus I made some exciting accomplishments.

I tried to get Aaron and Hunter into the rheumatologist that diagnosed me, but he was not taking any patients. I begged and pleaded, but in the end they consulted with the other 3 doctors in the practice and one came forward and said he knew the diagnostic criteria for EDS. He even thinks he can follow them if they are diagnosed, which is more than the doctor I, Dakota and Tristan were diagnosed by could do. So I hope we won't be disappointed there.

Aaron is doing quite well on his pain meds from the orthopedic doctor. He seems to be dealing with the pain much better. His MRI is scheduled for March 13th, I'm anxious to see what the results will show.

I finally found a family practice doctor in a new clinic to follow Aaron and I! I have high hopes for this one. The receptionist was so nice on the phone, the place sounds SO much nicer than what we have been dealing with, and one of the doctors there is a close family friend of ours (his son was the best man at our wedding!) I'm so excited. He took us even knowing about the Ehlers Danlos, which is major- last time I tried to get a new doctor, they said no. They didn't have the time to deal with a patient with EDS.

Dakota has an appointment to get his brace fixed. Dakota has been having a bad year with his EDS. He gained a lot of weight from the medicine that he was on last year for his bipolar disorder. Weight + instable joints + growing child = big problems. His feet decided to turn over so that he was walking on the inside ankle bones. He is completely flat footed to boot. So we took him to get foot orthotics to try to straighten out his feet. He was able to get away with a custom insert in one shoe- but he has a hard brace that comes up to his ankle in the other. It has some sort of foamy thingie (I'm sure that is the technical term!) inside the brace on the arch, and it chipped off last week. It is bugging him, wearing a blister on the inside of his foot. So Monday we are getting it fixed, YAY! He has been doing so much better in all aspects lately. His Tourettes ticks have been under control and his moods have been stable. He's been doing great in school and he has the best teacher on earth. I swear that woman is a saint. I really thank God that we ended up here in Petersburg. The schools are fabulous, and we have had nothing but the best teachers and principals. We really couldn't ask for better anywhere.

Hunter hasn't been doing as well. His psychiatrist had a baby, so she has been out on maternity leave and won't be back until May. The other doctors in the practice just aren't doing that great of a job picking up her patient load so everything has been a fight. I thought maybe his lithium level was too high. When it's too high, it makes him have a urgency to urinate comparable to a UTI, and makes it impossible to make it to the bathroom. Dakota has also had that problem in the past with Lithium. Usually it comes out through testing the blood level is too high and we reduce it and that symptom subsides. This time though, Hunter's moods have been all over the place, he has been very emotional and he is having the peeing issue. The problem is that his lithium level is okay. He seems very stressed out and I'm just not really sure why. I'm hoping that he talks to me more this weekend and we can get to the bottom of it. I made him an appointment to see one of the substitute psychs to see what is going on. I also made him an appointment to see his dermatologist. He is having major problems with his psoriasis. He is going through a growth spurt at the moment and his voice is changing. It's possible that it is hormones just making all kinds of issues with him. Being a teenager is hard. He did have fun last week though- he went to his first dance! He had a good time. He is starting to enjoy Jr. High.

I also made an appointment for Tristan to see the orthodontist. He saw a new dentist last week, and is going back next week for some fillings. She thinks that he is a "tongue thruster" and that is what is inhibiting his speech. She gave a referral to the orthodontist to get some sort of appliance that will retrain his tongue not to push off against his front teeth. I talked to his speech therapist and she is not sure that he does thrust his tongue, but I'm watching him this week when he eats and drinks to see if I can see him doing it. Wouldn't that be nice if something like a dental appliance could help what we have worked on in two years of speech therapy? I'm anxious to hear what they have to say.

I also called Giovanna's pediatrician. She went into their office last week to have her urine tested for a UTI. The test came out okay, but she is still complaining. They said to treat her for a diaper rash until Monday, and if she still had issues then to call back. That would be okay, but she doesn't have a diaper rash. I think after four kids I know what a diaper rash looks like. LOL! While I was making phone calls, she swallowed a dime. SO- I had to call them again. Boy did I feel like a fool! So I get to be on poop-patrol for the next couple of days making sure the dime comes out the other end. If not, Monday we will have to get xrays. Yay. :P I also called both of our insurance companies begging for them to cover a dentist for her. I managed to find a dentist that will see her, and I'm praying that they are the right route to go. They don't let parents into the treatment rooms, and I'm not sure I'm real comfortable with that. She has been very independant and outgoing lately, so maybe it will be fine. I'm hoping so, because if not the next option is driving to Missouri, and I'm not thinking that would be pleasant. She has several cavities again, and is having some tooth pain. I swear this poor kid has gone through more dental issues that the rest of us put together. I do wonder if it's an EDS thing. When her teeth came in they were just like chalk, they just flaked off, it was awful. I hope she doesn't have to have any more extractions.

I also got the vacuum from hell sent back to Dyson, that was four phonecalls yesterday right there. It took me two to get them to tell me what they wanted me to send, then one from UPS to tell me they were coming and another to Dyson to give them the tracking number so they could finally send me out one that isn't a lemon. This one has made 5 round trips to New York for service. Everytime I get it back it breaks two weeks later. It's been a total nightmare, especially since it takes weeks to get it back, and no vacuum cleaner in a home with two messy adults and four children, is NOT good. I pray this new one actually works, and keeps working!

So that is what I accomplished yesterday. I also went to the store, took the kids for a walk to the park, and worked on the teapot from hell.

The teapot from hell is a project I started in November,
and I've been working on it since. It should never have taken this long, but I'm the worlds worst procrastinator. I have had trouble with this thing all the way, but I really want to finish it and I'm determined. I need to finish this up so I can get to Giovanna's Easter dress. I'm praying to finish it up this weekend. Of course I said that last weekend too. Hence it's the teapot from hell.

So, I went to bed exhausted last night, but with a huge sense of accomplishment. Today I'm going to clean and hopefully get outside again with the children. Hopefully there won't be any surprises out there today! Yesterday Hunter came and told me there was something out back he had to show me, and you wouldn't believe! In our backyard, right under my bedroom window, there was a pair of boxer shorts and 3 used condoms. GROSS! I haven't touched them yet but I'm going to have to today if the kids are going to be outside. Don't worry, I have gloves. I truly want to hurl just thinking about it. What the hell must have happened out there?


The weather has been just beautiful and it's really done wonders for my mood. I'm definitely going to work on the teapot from hell today- maybe outside. Aaron is working overtime today, even though he's in pain. He is such an amazing man. I know he's exhausted both mentally and physically. I wasn't much comfort to him last night either, I was so past the point after my day. I'm hoping we can have some peaceful time to reconnect this evening when the day winds down. I'm ready for a relaxing, low key weekend, and I think we've earned it!