My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Physical Disability

Dealing with a PHYSICAL DISABILITY is different than dealing with mental illness.  Sometimes they go together, but today we are going to focus on the physical part.

As I've mentioned before, my son has Klippel-Trenauney Syndrome (KTS), which is a physical disability.  He was born with a large birthmark on his right leg.  That birthmark has led us on quite a journey and I know we have a long journey ahead.

Although he has a physical disability, his cognitive abilities are fine.  In fact, they are more than fine thankfully!  This means that he is very aware of what's happening to his body and what is happening around him.  He hears doctors say things and asks questions.  He notices that he can't keep up with other kids.

Including your loved one in their care if they are able (age appropriately) is crucial.  Some other things to consider are:

• Are there any therapies needed? (Physical, occupational, developmental, etc)
• Are there any specialists needed? (Orthotist, Dermatologist)
• What equipment is needed? (Wheelchair, lifts, braces, orthotics, compression garment, etc)
• Is their home accessible? (Can they get in and out of the house? Get around in a wheelchair if needed? Shower chair, hand rails, etc)
• Are they eligible for disability? (Quite the process, but could be worth it)
• Do they need a handicap parking tag? (Apply through the BMV)
• Do they need a caregiver? (If it is you, can you lift them if necessary?)
• What medications could help? (Is pain management needed?)

Next Up...Mental Illness

If this tip was helpful, check out the other posts in the series: Our Story, Internet, Grieving, Learn Your Role, Spouse, Child in Home, Not Living in Home

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Not Living In Your Home

The role of caring for a LOVED ONE NOT LIVING IN YOUR HOME is different than if they live with you.  The loved one could be a grown child, parent, sibling, friend, or other relative.

It can often be difficult to determine what your role is going to be and how involved you will be.
Some things to consider if you have a loved one with a disability or illness that doesn't live with you are the following:

• Does your loved one want you to be involved? (Whether you like it or not, this has to be considered)
• Do they have any other support? (Spouse, parents, friends, etc)
• Do they have the proper paperwork in order? ( (Wills, Trusts, Durable Power of Attorney for Health Care)
• Are you needed to be a primary caregiver? (Do you need to stay with them or them with you?)
• What are your goals for your loved one? (Healthy, independence, etc)
• Can your loved one financially support him or herself through this? (Are you willing or able to help?)
• Is their home equipped to handle their disability? (Wheelchair accessible, hand rails, etc)
• What services do they need need? (Speech, Physical Therapy, etc)
• What specialists do they need to consult? (Oncology, Dermatology, etc)
• What can you do to help with out overstepping? (Praying, dropping off a meal, visit, watching their children, cleaning their home, etc)

Dealing with any illness or diagnosis is often a roller coaster.  There will be sharp turns, ups, and downs.  Letting your loved one know that you are there for them no matter what they want or need is the most important thing.

Next up...Physical Disability

If this tip was helpful, check out the other posts in the series: Our Story, Internet, Grieving, Learn Your Role, Spouse, Child in Home,

Medical Madness ~ Gavin

Since I DARED myself to write a medical update on Gavin this week, I thought I would take the time to sit down and do it.  The problem is, there is so much to write. I'll do my best to remember it all and keep this post under a million words!

• GI Bleeding: Gavin's GI bleeding is still a daily struggle for us.  He's had procedures on August 15th, September 26th, and will have his next one on October 17th.  Dr. Hon did 5 or 6 injections on the last round and seems to think it is looking better.  I'm not sure how I feel about it because he is still bleeding often, we are doing procedures every few weeks, and the lesions are growing up further and further in his bowel.
• Bowel Prep: Gavin is no longer tolerating bowel prep well and it has been quite an unpleasant experience with lots of vomiting.  Next time, we are going to try a different version so fingers crossed it helps!
• Sleep Study: For about 6 weeks, Gavin was overall very sleepy and lethargic.  Dr. Walsh ordered a sleep study.  They didn't find anything.  While that is a good thing, it is also frustrating.
• Lab Work:  Poor Gavin has had lab work so many times.  He is a really hard stick and this often involves multiple sticks.  After a house call, we finally found someone who is great with him and can get him on the first try every time.  Now we just have to hope and pray she is there every time we go!  
• Triglyceride Scare: A few weeks back, I got a scary phone call on a Friday afternoon that Gavin's triglycerides were high and that he needed to be seen Monday.  He was at a higher risk for stroke and pancreatitis.  He had to stop his sirolimus for the weekend and lay low.  If anything changed and he acted weird at all, we were to take him straight to the ER.  It was a stressful weekend.  When we got there on Monday, they told me that his levels should be under 150 and were in the 800s!  CRAZY!  His levels had dropped since we stopped the medicine.  However, she wanted to start it back up again so added another medicine to counteract that triglycerides.
• ADHD Meds: Gavin had three medicine changes last week.  With that, he came out of the sleepy state and now is bouncing off of the walls!  We met with Dr. Voyles yesterday to adjust his meds again.  We are experimenting with different doses every other day so we shall see.
• OT and PT: Gavin is still doing OT and PT weekly.  His handwriting has greatly improved with OT, but we still have a few things to work on.  She is doing an evaluation on him in PT to see where he's at.  We've noticed that he is very inconsistent, awkward in his movements, and has difficulty with actions crossing the midline or requiring both hands to work together.  
• Eyes: Gavin's swelling in his eye nerves was the same last week as it was three months ago, but it's greatly improved from a year ago.  We still do not know the cause and may never know.
• Brain MRI: Because of all of the sleepiness and craziness going on, another Brain MRI has been ordered and is scheduled for November 10th.
• Limp: Gavin has been limping a lot lately.  He says that nothing hurts, but I'm worried about it.  We may be going back for leg xrays sooner we'd hoped.
• Weight Gain: Gavin's gained 6 pounds in about 2 months.  He's eating less and healthier, so this doesn't make much sense.  We aren't sure what's going on, but are keeping an eye on it.

I'm sure I've forgotten something...but as you can see...Medical Madness RULES our life!

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Child in your Home

The role of caring for a CHILD IN YOUR HOME is different than a spouse in many ways.  Whether they are ill or not, you are responsible for them until they are 18 (and often beyond).  It is also different if you are caring for or concerned about a child that does not live in your home (more on that to come).

Hearing that anything is wrong with your baby is devastating.  There is nothing anyone can say or do to make it better.  Often times, we are at a loss and need to GRIEVE before we can move on. Sometimes we don't have time to grieve and have to dive right in.

I have two children who have been diagnosed with disabilities.  Their disabilities and diagnosis are very different.  One is more physical and the other is mental.  I will talk about the differences on those in later posts.  Neither one is easy to deal with, but as I said, I am one to take things head on and get done what needs to be done.  

If you have a spouse or partner who will be helping you with your child's care, it is important that you are on the same page.  Some things to consider if you have a child in your home with a disability or illness are the following:

• What are your goals for your child? (Healthy child, independence, etc)
• Do one of you need to stay home or adjust your working situation to care for your child? (If so, who? Could one of you switch to a different shift to accommodate?)
• How will you financially survive? (Can you live on one salary if needed? Pick up an extra job?)
• What services do we need? (Speech, Physical Therapy, etc)
• What specialists do we need to consult? (Oncology, Dermatology, etc)
• How will we make sure our other children are taken care of? (Always a balance even if they are all healthy)
• What schooling will be best for our child? (Homeschooling, special education classes, a different school)
• How can we include our child in decisions about his or her care? (Depending on age and cognitive ability, it is important to include your child, especially if your goal is independence at some point)
• Is our home equipped to handle their disability? (Wheelchair accessible, hand rails, etc)

Dealing with any illness or diagnosis is often a roller coaster.  There will be sharp turns, ups, and downs.  Some things may not apply to you right now, but will at a later time.  When my son was a baby, he had one doctor we saw every few months.  Now he has around 12 whom we see very often.

The answers above will change, so just keep talking about them and making sure you are on the same page.  All you can do is your best.

Next up...the role of a parent with a child NOT living in the home.

If this tip was helpful, check out the other posts in the series: Our Story, Internet, Grieving, Learn Your Role, Spouse

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Spouse

If your SPOUSE is the loved one with a disability, it is quite different than if your child has a disability.  I've learned this first hand.

If your spouse is sick, it changes everything.  Depending on the illness, it may effect your income, strain your relationship, and cause your whole household to be flipped upside down.

With my children, I can make the phone calls and appointments myself.  Insurance will speak to me about anything.  I can talk to all doctors and nurses about their care.  I also drive them to the places and force them to follow all of the doctor's orders.  This is not the same with a spouse.

If your spouse is capable, sit down and have a conversation with him or her about your role in their illness.  It would be good to consider the following:

• Will you be included in decision making regarding care? (I hope yes)  
• Will you be able to speak to doctors if needed? (Ask your spouse to fill out paperwork at doctors' offices for them to share information with you)  
• Will you go to appointments with your spouse? (It's often good to have a second set of ears at appointments)  
• Who is going to handle the insurance and bills? (File for Financial Aid if needed) 
• How will the illness effect the rest of the household? (Children, finances, household chores)  
• Does your spouse need accountability to take medications? (Medications are often a huge key in recovery or leading a more stable life) 
• Would counseling help us through this? (Individual or as a couple) 
• Do you need to get paperwork in order for worst case scenarios? (Wills, Trusts, Durable Power of Attorney for Health Care)
• How much will you share with loved ones and friends? (Who will do the sharing?)
• What care do you (your spouse) need that you aren't currently getting? (Therapies, equipment, etc)
• What do you need from me as your spouse and best friend? (Love and support)

Because you are dealing with your spouse, it is important to treat him or her with a great deal of respect.  This is crucial in order to maintain a healthy relationship.  It is very difficult at times, but you have to remember why you fell in love with him or her in the first place.  Encourage them, stand by them, and celebrate the good moments, no matter how small.

I am amazed by how many people tell me how "inspiring" or "beautiful" it is that I am staying with Brian through his illness.  I look at them in disbelief and say, "Of course I am!"  I signed up for marriage "...in sickness and health, til death do us part..." and vowed before God and our loved ones.  I don't take that lightly and would like to think that if it were me, he'd do the same.

Next up...the role of a parent with your child living at home.

If this tip was helpful, check out the other posts in the series: Our Story, Internet, Grieving, Learn Your Role

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Learn Your Role

This is a hard, but very important tip.  It is crucial to LEARN YOUR ROLE.

Your role will be different if your loved one lives in the same home with you vs if you are a concerned friend or family member from afar.  Your role will be different if it is your spouse vs your child.  Your role with be different if your child is a minor vs grown and on their own.  Your role will be different if your loved one has a physical disability or illness vs a mental disability.

Here are some questions to consider: Are you needed to be the primary caregiver (ie a minor child) or are you just a support person? Are you needed to make all medical decisions or is your loved one able to make decisions for themselves?  Are you capable of taking on that role or do you need to get outside help?

Sometimes there isn't time to stop and think and answer these questions, but if there is, I advise you to take the time to consider them.  If you have a clear understanding of what your role in the recovery or treatment process is, it will lead to less confusion, resentment, and stress (if that is even possible).

In future posts, I will give tips about what to do for each role.

If this tip was helpful, check out the other posts in the series: Our Story, Internet, Grieving

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Grieving

After avoiding the internet, my next tip is to TAKE THE TIME TO GRIEVE.

Grieving is not only related to death.  Often times, we have to grieve what we pictured or what we thought might be.  A therapist once told me that in order to deal with a new difficult situation in life, you must grieve the future or outcome you'd envisioned before you can move forward.

In college, I read an article titled My Trip to Holland.  It was written by a mother who had a child with a disability and she likened it to planning a trip to Italy and your plane landing in Holland where they speak a different language and require different gear than she'd packed.  Holland isn't bad, but she had to let Italy go to allow herself to accept Holland.  I wrote about my trip to Holland last year.

I pictured a life with a healthy husband and three healthy children.  I pictured a life with "normal" complications and stressers. I pictured a life where we would be financially stable.  I pictured a life where we would only visit a doctor's office a few times a year.

My life is not how I pictured and I've had to grieve. I do not think that anyone wants anything to be wrong with a loved one, especially a child, but it happens sometimes.  I am the type of person who wants to figure out what's wrong and deal with it in the best way I can.

How long does it take you to grieve? I can't really answer that.  Each situation is very different.  I've personally handled each diagnosis differently.  It is important to remember that grieving is a process but it is a very important step to take when dealing with a loved one who has been diagnosed with a disability or illness.

If this tip was helpful, check out the other posts in the series: Our Story, Internet

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Internet

My number one tip for anyone who has recently had a family member or loved one diagnosed with a disability or illness is to NOT LOOK UP ANYTHING ON THE INTERNET.

The internet is a huge resource with lots of information.  However, just because it is on the internet doesn't mean that it is helpful or accurate.  Often times worst case scenarios are put online and it can be terrifying.

When my son was born, he had a large birthmark on his leg.  Besides what ideas doctors and nurses were throwing out, we had no idea what was really going on with him and were not prepared for anything to be wrong with our precious bundle of joy.  Different diagnosis were being discussed but nothing was set in stone.

While I was still in the hospital, visitors were going home and googling those possible diagnosis and sending me links of articles and devastating information.  It was more than I could handle and turns out, he didn't have any of the things they were sending to me!  Since then, I've been very cautious about what information and medical terms I give to others.

If you are one who really wants to read up on something, ask your doctor or specialist for sites they recommend that have accurate and useful information.  I have looked at a few sites, but overall have steered clear from the internet when it comes to information regarding my family members' disabilities.  Many doctors have thanked and praised me for this and I am much happier for it!

If this tip was helpful, check out the other posts in this series: Our Story

My Loved One was Diagnosed with a Disability or Illness...What do I do now? ~ Our Story

I am planning a series of posts about what to do if your loved one is diagnosed with a disability or illness.  Unfortunately, I have a lot of experience in this area.  Before I give the tips and tricks I've learned along the way, I thought I'd give a little more information about us.  I can't type the whole story because it would take years and no one would read it all.  Here is a quick overview:

Three of our family members live with a disability.  Two have Bipolar Disorder and one is diagnosed with Klippel-Trenaunay Syndrome.  All of them have a form of ADHD, two have anxiety, and two have behavior disorders.  I have also suffered from situational depression and anxiety.  That leaves one family member who has yet to be diagnosed with anything.

One disability was recognized at birth (even though it took a while to get the name) and the others have taken years to diagnose and find the proper help and medications.

We have 16+ doctors and medical professionals caring for our family.  We have 15 current daily medication prescriptions.  We go to anywhere from 4-10 doctor or therapy appointments every week.  We travel to Riley often and our son's procedure count is now in the 20's (I need to make an exact list).

I have gained a lot of knowledge and want to share it with others to make their journey easier.  Next up, I will post my number one tip for when a loved one is diagnosed with a disability or illness.

At Home Pharmacy

These days, we have a mini pharmacy in our home and visit Schnuck's pharmacy at least once or twice a week.  With medicines constantly changing, it's hard to keep up with it all.  I've come up with a way to finally get organized.  Gavin takes the most pills with up to 7 twice a day (one pill is weekends only), Brian takes 6, and Macie takes 2.  

Here is how I keep them organized:

• I put all of the current meds in a drawer in the kitchen.  I put all meds that we've tried in a place in the bathroom for a period of time because we often cycle back to it.
• I label the top of each bottle so when I grab into the drawer I at least know which person's pills I'm grabbing.  
• Gavin's pills are laid out weekly in the blue container below and I plan to buy two more containers for Brian and Macie.  This not only makes it easier to find the pills, but helps to us know if they've been given that day.

Riley Trip

Last Wednesday, Gavin, Lilah and I went to Riley.  Macie stayed with Grandma.  She had an appointment with Dr. Below.  As an added bonus, it was the first time she'd spent the day alone with Grandma since before Gavin was born!  The trip was quite stressful with being stuck in traffic due to an accident on the way there and bad storms and tornadoes on the way back.  We survived though.

Gavin had an abdominal ultrasound and an appointment with Dr. Walsh scheduled.  Gavin and Lilah were both super well behaved and got many compliments during the appointments which made this Mama proud.  After the appointments, we went to the Indianapolis Children's Museum for a bit to check out the new Doc exhibit.  It did not disappoint and we hope to make a few more trips there before it closes.  I'm going to do a Medical Madness post soon because there is so much going on with Gavin...stay tuned!

We packed a lunch and had a "picnic" in the hospital!

Pure Sweetness

Gavin's New Ride

We are all thrilled to FINALLY have Gavin's new ride!  He picked the red and I love how it turned out.  He was super happy to pose for pictures and that it came with a backpack!!!  We still have the loaner one until next week.  Since we have two, we allowed the girls to take a spin.  They usually aren't allowed in it.  They were happy as can be!  We've also recently gotten a handicap tag for the car.  It will really come in handy!  Next up...building a wheelchair ramp for the front to get into the house.

Riley Trip ~ GI Procedure

On Monday, Gavin had another GI procedure.  Grandpa came with us since Brian is back to work. Before the procedure, Donna and Dr. Marshalleck came in and did a quick ultrasound of his leg.  While there are small areas to keep an eye on, there is nothing to fix at this time. Yay!

Gavin was ready to get the show on the road since he hadn't eaten since Saturday night.  They were running a little behind so we kept busy watching the Olympics.  The procedure didn't take too long. Dr. Hon said that things didn't look that differently than last time, but that she didn't have as many areas to inject. She wants to wait 4-6 weeks for the next procedure.  

After the procedure, Gavin was able to finally get his new wheelchair.  They had to do some final adjustments to make it work for him and then we were off.  On the way home, we stopped at Subway which was Gavin's pick.  Once we were home, I noticed that Gavin wasn't feeling the best and running a low grade fever.  His right knee was also bothering him.  Thankfully, it didn't get too high and we were able get an antibiotic called in for him.  Every little thing with him worries me.  I just keep praying for the day when I don't panic over a fever!

Medical Updates ~ Gavin

I saved Gavin's medical update for last because he has the most to talk about!

• Since my last update, Gavin has had two GI procedures and he has another one scheduled for this coming Monday.  The lesions in his bowel are growing and the injections are not really helping.  The last procedure was kind of scary because blood was pooling and the doc had to sit and stare at it for five minutes to make sure that it didn't get out of control. We are going to do these procedures to make sure that we keep an eye on everything.  He continues to have daily GI bleeds and lately, it's been more than once a day.
• We met with Dr. Hegge (oncologist) back on July 1st and decided to go ahead with the treatment plan.  She did a great job answering all of my questions.  While she did agree that it is on the more aggressive end of treatment, he is to that point already.  This makes me sad.  We are able to give him the medicine twice a day mixed with orange juice.  He also takes an extra medicine on weekends to help prevent a pneumonia he is now more susceptible to.  We've been increasing the amounts slowly and he is now in the therapeutic range. 
• Gavin has to do weekly blood labs.  He is a hard stick and being on a diarhettic does not help. Thankfully, they've agreed to allow him to go every two weeks for now.
• He is now on five medications: diamox (excess spinal fluid), gabapentin (numbness and pain in legs), septra (pneumonia preventative), intuniv (ADD), and sirolimus (chemo treatment).
• He is continuing his OT and PT past summer because both therapists thought that there was still plenty to work with him on.  I am thankful because I see the gaps but that does mean two extra trips/appointments each week.
• We were able to get a handicap tag for our car.  This will really come in handy when we use the wheelchair and when he is in more pain.
• Upcoming Riley Trips: GI Procedure 8/15, Kidney Ultrasound and Dr. Walsh 8/24, Dr. Neely 9/20 and Dr. Haggstrom 9/21

Medical Updates ~ Macie

Macie and I have been going to her weekly PCIT (Parent Child Interactive Therapy) sessions. Not only do we go once a week to see Dr. Below, but we also do daily "special play time" at home.  During therapy and special play time, Macie does really well and is very well behaved.  I also see other periods of the day where she does well.  Her school work so far has been great, she has been more helpful with things around the house, and she has been teaching other family members what she's learning from Dr. Below.

Unfortunately, we still have daily outbursts.  The cussing, screaming, spitting, kicking, hitting, name calling, etc is exhausting to deal with.  As I've mentioned before, her eyes turn grey and the expression on her face totally changes.  There is little I can do during this time to change the situation except remove her from the "scene of her anger".  Dr. Below has taught us many techniques and they work when she is on level 2 or 3, but once she is at a level 4, it is too late.

Dr. Voyles upped the dose of her medicine to get us through until her appointment with Dr. Kaplan, but I honestly think she's been worse.  Dr. V and Dr. B both think that she needs some kind of mood stabilizer and I couldn't agree more!  I am so anxious to meet with him on the 25th.  I just pray that it is a good experience, that he listens to me, and that we can figure out how to help Macie.

Medical Updates ~ Brian

So much has happened since I've last posted about our Medical Madness.  I thought I would update about everything we've been going through lately.

Although we thought we were on a good path with Brian medically, we still knew that something wasn't quite right.  After trying to do everything we could at home, we took Brian back to the hospital.  After a long night in the emergency room and an ambulance ride to a different facility, Brian was admitted.  He spent 9 nights and 10 days in the hospital.  This was a long time, but at the same time, a very good thing.  I was able to visit Brian every day except one and the kids were even able to visit twice over Father's Day weekend.

When he was finally released, his medicine levels were close to therapeutic and we had a good plan in place.  The bad thing was that he lost his job and insurance.  We were able to fill up the meds to get us through. Overall, I would say that Brian is in a much better place.  However, every day is a new day and we never know what it will bring.  He ended up having 7 weeks off from work (counting the hospital stay) to regroup and focus on himself.

He just started a new job this week and he plans to start bartending next weekend.  We are still trying to deal with all of the medical bills.  He was in 4 different facilities overall.  We are also working to get him a new psychiatrist and therapist.  Hopefully, we can figure all of that out soon.

Medical Madness

Now that I've gotten caught up on all of my phone pictures, I thought it would be a good idea to do an update on everyone's medical status.  I still plan to blog pictures from our camera.  I know there are some big events on their like John's wedding, the kids birthday parties, and Christmas morning.  I know the medical stuff is boring to some, but it is so important for me because it helps me keep track.  I'm mad at myself for not doing a better job, but I have to give myself some grace.

So as I mentioned in the "My Reality" post, I have three sick family members I am caring for and it is taking it's toll on me. A lot has been going on.

Brian ~

• Right now, Brian's official diagnosis are 1. Unspecified Attention Deficit/Hyperactivity Disorder 2. Bipolar I Disorder
• Unfortunately, things got a lot worse before we saw any improvement.  He's been to multiple doctors and facilities trying to find the right treatment plan.
• We are finally with a doctor and therapist who we feel are a good fit for him.  The negative part is that they are located in Madisonville.  He is currently seeing them every other week and that will go on for at least 6 months.
• We also feel like we have found some good medicines.  Now, the doctor is trying to get him on therapeutic levels safely and that takes time. 
• Overall, we see improvement, but there are many bad days.  We are praying that with time, the medicines will level out and he will be able to have the best quality of life possible.
• Part of this process is coming to full acceptance that this is our life now and that we have to do everything in our power to make it the best life we can.

Macie ~

• Macie is currently only on an ADHD medicine and that is not enough.  We have a referral to see Dr. Kaplan (psychiatrist) and she will go to him in August.
• Her anxiety is really bad right now and she struggles when I am alone in public with them.  She is constantly afraid that someone will take her or her siblings.
• This week she started therapy with her psychologist, Dr. Below.  She was very excited about this and so was I.  Starting next week, she will start in an intensive 14 week PCIT (Parent Child Interactive Therapy) program where I will be involved in her sessions.  We will go once a week for an hour.  After that, she will start having therapy 2 times a month.  This is a lot, but it is so important. 
• Dr. Below also thought that Bipolar Disorder may be a better diagnosis for her due to her reaction to a stimulant (she went into mania), but is going to leave that to Dr. Kaplan.  She agrees that the sooner we get the diagnosis, the better long term care we can provide for her.
• Her goal is to make her more self aware and better able to understand, accept, and deal with her disorder so that when she is an adult and on her own, she has a better chance of a higher quality of life.

Gavin ~

• Gavin had pysch testing and when I got the results he was diagnosed with ADHD (without the hyper part), and "Unspecified Disruptive, Impulsive-Control, and Conduct Disorder".  Basically, he is really aggressive towards me and his sisters and it justifies the anger management therapy that Dr. Bowersox is doing. He is going to continue therapy with her 2 times a month.
• We met with Dr. Voyles and he put Gavin on the same ADHD medicine Macie is on because it is not a stimulant.  Given our family history, it is best.  It makes him really drowsy in the beginning, but I can already see an improvement in his focus and attention.
• During the testing, Dr. Bowersox suggested an OT evaluation for handwriting.  We had the evaluation and he did qualify for handwriting and a few other small tasks.  He now goes to Easter Sills on Wednesdays for PT and OT back to back.  We are hoping to just give him a boost in both over the summer.
• When we met with the geneticist, he indicated that Gavin diagnosis may need to be changed from KTS to CLOVES.  However, when I met with a group of his doctors, they weren't ready to make that change.  I will just keep it in the back of my mind and see.  It doesn't change his treatment plan at this time.
• Gavin had an ultrasound of his kidneys and they checked out fine.  We will repeat this in a few months to be sure.
• He recently had an appointment with Dr. Neely and his eyesight is getting worse.  The swelling is going down, but his vision seems to be worse.  They changed the prescription and we should be getting the new glasses soon.  He also prescribed transition lenses because his eyes are extra sensitive to the sun.
• Gavin has been having a lot of pain down by his ankle on his right leg.  I mentioned it to Dr. Marshalleck and he looked at it with an ultrasound. He didn't find any gaps to put any coils in, but he found a blood clot.  The clot is trapped by the coils so it shouldn't go anywhere.  However, it is causing Gavin a lot of pain.  So much that he isn't walking or doing much.  The problem is, Gavin can't be on blood thinners because he is already bleeding too much.  It makes treating the clot tricky.  At first they said it would just take care of itself, but now we are worried there may be an infection.  They've prescribed antibiotics and high doses of pain meds and we are making him take it easy right now.  If it doesn't get better by Monday, we will be making a trip to Riley.
• Gavin's GI bleeding is back with a vengeance!  He went 5 months without bleeding.  That is not long at all. Right now, he is bleeding almost daily.  He has another upper and lower scope scheduled for June 27th.  They will most likely do more schlerotherapy (injections) at that time.
• We are adding a new doctor to Gavin's team.  Dr. Hegge is an oncologist.  She is going to do a bunch of lab work on the 27th (when he is already under) and then we are going to meet with her on July 1st.  She is offering to start a new type of medicine (basically chemo) to help with the bleeding and take away so many procedures.  I am a nervous wreck about it and haven't fully decided if this is the way to go.  I am going to do more research and pray that we make the right decision.  Dr. Haggstrom feels like we should give it a 6 month trial and see how he does.