Tuesday, February 28, 2017

A day for the doctors

This morning we took Caleb to his 3 month med check with his pediatrician.  We had to see the pediatrician instead of the health advocate because we had multiple questions the health advocate couldn't answer.

*Caleb has only gained 1 oz in 3 months despite having been working with JanaLee at the Wellness Clinic since December.  I was disappointed in this.  Last time we worked with JanaLee he made great progress!

*We asked about having Caleb tested for Celiac's Disease since Kris was diagnosed a couple weeks ago.  The pediatrician was good with ordering that blood work.  I asked if having Celiac's would mess with his growth like we've seen.  He said that it would be possible for it to mess with it some, but not a huge amount.  It would be more of an absorption issue than a growth issue.  After our appointment we went down to the lab and had his blood drawn for the Celiac's disease.  They have to send the labs out to SLC for this so it will be a few days before we hear anything.  Caleb was NOT impressed with getting his blood drawn.  He was quite pissed actually.

*I asked about having him tested for heavy metals.  When I had spoken with the chiropractor about everything that was going on, he suggested having him checked for heavy metals.  I'm a bit skeptic on this because I don't think he's been exposed to anything.  The pediatrician didn't feel like that was going to be worth while to run that test, so no heavy metals testing.

*I asked about a referral to an endocrinologist.  I told him what JanaLee had said about his pituitary and endocrin system showing up as being low.  I told him how we had done NAET testing prior and he had no idea what I was talking about.  I explained it the best that I could but I'm hoping he goes home and does some research to educate himself so he knows what I was talking about.  Not going to hold my breath though, I know he's a busy guy.  He was reluctant in agreeing to refer us to an endocrinologist.  Dr. Clarke was an endocrinologist and he never mentioned a concern with that for Caleb.  Dr. Sandgren said that typically the endocrinologists won't do much until you have height going up and weight going down.  Although Caleb is growing at an exceptionally SLOW rate, he's still growing, he isn't losing weight (today we learned he weighs 44 lbs and B weighs 51).  He said he would put in a referral for us, but I could tell he was reluctant to do so.  He had mentioned one in Ogden but I asked about PCMC.  I figure if there's anything major going on that's where we'll be sent anyway seeing as how they are the ones who specialize in children - no sense in seeing two different endocrinologists.  I agreed to wait a few more months before pursing the endocrinologist.

*Dr. Sandgren feels that seeing the nutritionist would be beneficial, even though we saw one before and it was a joke to say the least.  He feels that she may be able to dig a bit deeper and give us a some helpful advice seeing how Caleb is an INCREDIBLY picky eater on top of these other issues.  We go see her March 29th.

*Dr. Sandgren asked if we've noticed Caleb's appetite being suppressed.  I told him that he actually has a better appetite when he's working with JanaLee.  He still eats limited foods (SO picky), but he eats more of those foods when he's working with her than when he's not.  We kept his Metadate the same dosage but are keeping an eye on the appetite to see if it diminishes, as that would be a problem with his size.

After Brookelyn got out of school it was her turn to go see the ENT.  We were in and saw Lindsey on January 30th,.  At that appointment she had the entire tip of a Q tip pulled out of her left ear.  We were told to do drops for 10 days and come back about March.  We've done drops for most of February.  She's still complaining that her ear is bothering her.  She doesn't say that it hurts, it's just "bugging" her all the time.

*We saw Lindsey again today.  The audiologist tested B's hearing before Lindsey came in.  He told me that her right ear drum wasn't moving (fluid in it) and that the tube in the left ear was blocked (it's going on 3.5 yrs old so I'm not surprised).

*Lindsey said that her right ear drum has fluid in it - more than when she was there a month ago.  She said it doesn't look awful, but it looks worse than it did a month ago.  It's very retracted (think vacuum tube vs plastic wrap).  The tube in her left ear is indeed permanently blocked.  It's highly likely the ear drum behind the tube has healed and the tube is basically just sitting there not able to come out.

*We were give a couple different options.  First option was that we could do 5 days of a high dose steroid and a nasal spray.  We could do this for a week or a month and see if it helps.  This makes me leery as she's been croupy and when she does the nebulizer that's already a steroid, so adding another steroid will compromise her immune system and she will be more susceptible to infections.  Another option is to go in and take out the tube that's there and put another set of tubes in.  Travis was not a fan of this idea.  I asked about something we discussed when this last set of tubes was put in.  There was talk of possibly going in and removing part of the bone that connects to her jaw bone in an effort to widen her ear canal to help prevent her from getting more ear infections.  At this time, her ear canals look really good and she hasn't been getting ear infections, so that option is off the table.

*After quite a bit of discussion, we decided that we would put her under and put another set of tubes in.  I asked if they would be putting in two in each ear again as this is what she's had done every time but the first.  Dr. Blotter said that's a great question and honestly he isn't sure.  That's something he's going to have to ponder on and won't really know until he gets in there.  He said that it depends on her ear drums and how they react to the incision.  The ear drum that's retracted may be just fine to put two tubes in after it equalizes the pressure and it may increase the size of the incision so that he can't put two tubes in there.  We also discussed the possibility that her ears are full of pus pockets (lovely, I know).  He said if there's a bunch of infection in there then yes, he will put two tubes in each ear if possible.  We also discussed what kind of tubes he should put in.  They make a variety of different kinds and to be honest, B has tried them all.  She does best with the titanium (that's what's still in there after 3 years).  However, depending on what happens after the incision is made, will determine which kind of tube he can use.  The shape of the titanium tube is like a spoon.  The T tube is longer and more narrow.  If the ear drum will allow it, he will use the titanium tubes since that's what she's done best with, if not, he will go with the T tube and hope that at her two week follow up her body hasn't rejected them and kicked them out.

*So, B has ear surgery set up for March 16th.  There won't be a fat graft at this time (that's what we discussed a month ago when we talked about taking the last functioning tube out).  This will be her 7th (and possibly 8th) round of tubes.  They did say that since she isn't equalizing the pressure in her ears, it's essentially feeling like her ears need to pop all the time.  No wonder she's always complaining about her ears bugging her!  They would be bugging me too!

*Sam goes to physical therapy on Wednesday for a re evaluation on her knee.  I'm a bit concerned about how that's all going to turn out.  She's essentially quit wearing her brace because it hurts as much with the brace as it does without now and the brace is starting to hurt the back of her knee.  Based on how she's been filling out the paperwork the last time or two at physical therapy, I'd say the pain has increased.  I find this odd because she's been saying the iontopheresis helps her knee feel better.  My gut is telling me we will be going for an MRI after we see the orthopedist on Friday.  I'm crossing my fingers that she hasn't got any damage to her meniscus.  I'm not sure how she would handle sitting out an entire dance season.  It's possible she wouldn't survive or she would drive me to the brink of insanity.

All I can say is that things are suppose to come in three's, right?  I've got three kids and four-five issues (Caleb & weight, B with her eyes and ears & Sam with the patella & meniscus).  I'm just glad we have insurance again and apparently it will be a "Meet the deductible quick" kinda year.

Monday, February 20, 2017

Sam turns 14!

I had a lunch date and shopping planning with my two best friends for Friday, February 18.  Sam didn't want to be left home with her dad and the other kids so she asked if she could come along.  I relented and she brought Jade along as well.  We had a fun day of shopping with the girls and lunch.  Afterwards, we went to see the Lego Batman movie.  Everyone had to wear their new Batman shirts!

For her cake this year she sent my MANY Pinterest options.  The themes were random but totally her (New York, Batman, Unicorns & Dance).  I finally mashed together unicorns & dance and she was a happy camper about it.

She was thrilled to add two new unicorns to her ever growing unicorns herd.

I couldn't pass this shirt up when I saw it.  It says "Ballet...like a sport, only harder"

Bradshaw's got her a Batman coin bank.  She was ridiculously excited about this.

Leave it to Grandma Terri to find her some awesome new cat socks!

And, Grandma Terri got her her new doll (only 2 more and a graduation & wedding one left in Sam's collection!)

I can't believe she's this old (or maybe that I'm this old).  However, I will say I seriously CANNOT wait for her to get her driver's license so she can drive herself to dance class!  I will FINALLY get my life back!  She started competitive dance in second grade!  Not only can she drive herself, she can drive her sister!  Whoot, whoot!

Updates on kids

I'm fairly certain that Caleb will forever be my medically challenged child (too much like his mother that way).

Today we went back to the Wellness Clinic to see JanaLee.  We went back in December after his pediatrician said he had dropped from the 4% for weight to the 2% and from 4% for height to 3%.  I told the pediatrician we had had success at the Wellness Clinic previously so he told me, "If it ain't broke, don't fix it - go back."  He told us when we saw him in November that if Caleb didn't start making some progress he would have to refer us to the dietitian (I told him we had done that once already and it was a joke.  He said that he would give us a referral to the other dietitian.)  He said that if Caleb didn't make progress after seeing the dietitian that he would refer us to Primary Children's Failure to Thrive Clinic.  Sounds familiar, right?

When we went back to the Wellness Clinic in December (after a hiatus since May), Caleb's numbers were almost as bad as they were when he originally went in in October of 2015.  At this appointment JanaLee asked if anyone had ever referred us to an endocrinologist.  I told her they had not.  She said that the testing was showing he had low endocrine numbers and low pituitary numbers.  She stated that if she couldn't make a difference by spring she would recommend that we go see the endocrinologist at Primary's.  After some consideration, I've decided that pituitary issues would make sense - that's where the growth hormone comes from.  He doesn't grow and he doesn't lose teeth - of the 10 he's "lost" the dentist has pulled 8.  His teeth also take FOREVER to grow in!  He had the four front teeth pulled in October 2015.  The two front ones grew back in Sept. of 2016.  The laterals STILL have not grown back (that's 16 months).  He just had the canines pulled a week and a half ago to make room for the laterals when they finally grow in.

Today I told JanaLee that my mother in law was diagnosed with Celiac's about a week and a half ago.  I asked her if she could look and see if he's showing any sensitivities to wheat and gluten.  After the testing he was there for, she checked the wheat and gluten sensitivities.  He IS currently showing a whole wheat and gluten sensitivity.  When I go into the pediatrician's office on Friday this week for his med check I plan to ask if they will do an autoimmune panel to check for Celiac's.

We also visited the chiropractor today.  I was telling him about what's going on with Caleb and he suggested that maybe I should have him checked for heavy metals.  I plan to ask the pediatrician to check for that when he runs the autoimmune panel on Friday.

At this point, I'm willing to try just about anything with Caleb.  He's 8.5 and his 5.5 year old sister outweighs him and is only about 2-3" shorter than he is.  I understand he might be small because of genetics, but I don't think anyone in either of our families has ever been as small as Caleb is.  His wrists are just teeny and you can see his bones when he doesn't have a shirt on.  He eats, just not a whole lot and not a huge variety.  We did the NAET testing and treatment with JanaLee, but perhaps the autoimmune panel will show we need to delve a bit deeper.  I'm just not quite sure what else to try with him!

Last week I took Nash in to see the eye doctor.  I had them reprint his prescription when I took B in at the beginning of February.  When I told Nash I was going to look online to get him some glasses he told me, "Good.  The board has gotten REALLY fuzzy."  I told him I wasn't going to order new glasses until I had his eyes checked because it would be just my luck to buy new glasses with the prescription that's a year old and have them not be effective because his prescription had changed a bunch.  Sure enough, each eye is worse than a year ago!  Good thing I took him in before I bought glasses!

And last week we finally went back to allergy shots!  We haven't been since September because Travis lost his insurance.  At the time Nash & Sam were both on once a month for maintenance doses.  Since it's been so long since they've been, we now have to go once a week until they get back to their maintenance doses!  There really needs to be more hours in a day!

Speaking of needing more hours in a day, Samantha is still doing physical therapy.  She's had 3 rounds of iontopheresis.  She goes back Wednesday this week for round 4 and then we'll decide if she should continue with two more rounds (they can only do 6) or not.  She doesn't go back to see Dr. Seale until March 3rd.  Her knee is still bothering her quite a bit.  I know she was upset about ballet class because she can't do certain moves without it hurting quite a bit.  I have a feeling that when we go back March 3rd we will get an MRI order.  She doesn't seem to have developed any new pain, but the pain isn't getting better.  That's even after she's cut out running, kneeling, squatting and lunging.

B's ear is still bothering her.  We've been doing ear drops since she went in and had the q tip removed.  Since it's still bothering her I scheduled a follow up appointment for this week to see if there's something else floating around in there.  I have a feeling that the tube is still in place.  If that's the case, I'll just go ahead and schedule the removal & fat graft surgery.  Perhaps we can deal with that over spring break?  Of course, that will depend on what Dr. Hoffman tells us when we go see him on March 21st.

All I can say is at least we have insurance again!

Thursday, February 9, 2017

Brookelyn vs the doctors and other interesting things

This kid I tell you.

Brooke's had more ear annoyances than her sister (who I thought was the Queen of ear issues).  She's been complaining for quite some time that her ear has been bugging her (the left one).  I chalked it up to "same ol', same ol' " and kind of just ignored it.  Until she started asking to go the ear dr.  I was able to get us in to see the ear dr last week.  Turns out sister had the entire tip of a q tip stuck in her ear!  Well, maybe that's what was bugging her?!  The dr. said that the q tip may be the reason that her ear has continued to drain.  I think the q tip actually stopped the draining because it hasn't drained in about two months.  It turns out she also still has a tube in that ear.  Wouldn't be a bad thing except said tube was placed in November of 2013.  That means we are going on 3.5 years with the same tube in her ear.  This particular tube cannot be removed in the office (of course, why would we use tubes that can be removed in the office?!).  I explained my concern that if they are left in much longer she would need to have a fat graph like Sam did when she was in second grade.  Turns out that they will have to do surgery to remove this particular tube if it doesn't come out on its own (soon) and that when they do that they would also do a fat graph at the same time (a two-fer if you will).  To my dismay, they won't do anything until the weather warms up (at this rate, that may be July or August!).  I was told to do ear drops for 10 days and to call and make an appointment at the end of March/first of April.

In addition to her ear bugging her, Brookelyn has complained of a headache dang near daily (and not just once a daily, ALL day) for about 4-6 weeks now.  I finally decided it's either got to be allergies or her eyes.  Seeing how her mother and three siblings all wear glasses, I figured we would start with what's easiest and make an appointment with the eye doctor.  Yesterday was her appointment.  She was quite bashful with Dr. Perry but she was really good to do everything he told her (he even dilated her eyes and she did super great!).  Turns out, her right eye is turning out.  I can't remember the exact name of the diagnosis - intermittent exotropia or something.  I have NEVER noticed her eye do this.  He said that if the headaches don't go away (or they get worse) in the next couple months, or if the eye turn gets to be 50% of her day or more that he wants us to go see Dr. Hoffman at the Moran Eye Center at PCMC.  In talking to Samantha last night, apparently this eye turn happens all the time.  Samantha was mortified I hadn't ever seen it because "it's totally creepy and freaks me out!"  When I asked her why she didn't say something her response was "I didn't want to be the girl with the weird little sister who has crazy eyes like the guy on Ridiculous 6!"  I was like SAMANTHA!  In talking to a friend of mine last night she tells me, "Yea, I've seen it do that.  I thought she was tired and chalked it up to that, that's why I never said anything."  And then today I'm talking to Nash and he's like, "Yea, it's weird when she does that."  I was like "What the heck!?  Am I the only one who hasn't witnessed this?!'  I had decided after talking to Sam and Danielle last night (Danielle noticed it TWO YEARS AGO) that I should call Dr. Hoffman's office and make an appointment.  So, I called this morning.  The soonest appointment they have isn't until March 21.  So, We will be going down to meet Dr. Hoffman on March 21.  Dr. Perry did tell me yesterday that the way they correct it is with eye surgery by shortening the eye muscle to get the eye to straighten out.  It doesn't sound like it's a huge deal and I've been told Dr. Hoffman is definitely the best of the best and who you want if you need to have surgery.  So, I guess we will wait it out a month and go see what Dr. Hoffman recommends.  Meanwhile I'm going to be watching sister's eyes like a hawk so I can witness this for myself!

Tonight we had the opportunity to go to my dad's commencement in his rehab program.  He's graduating to Step 12 in his 12 step program.  Grandpa and Marion and Darwin were there in addition to mom, our family and Cass's family.  Zacc had a migraine hit him and couldn't be there even though he really wanted to be.  Nick (one of his counselors) said some words and then opened it up to dad and the family.  Dad said a few words and then everyone but Chad and the kids got up and said something.  Then they opened it up to the group members.  They kept saying that dad doesn't say much but when he does it's full of wisdom and always profound.  I'm glad that he's been able to influence people in his rehab program.  Saturday will be 6 months clean and sober for dad.  I honestly never thought I'd live to see that day.  I really hope he stays sober and that the change is for good.  He's a totally different person and he's fun to be around again.  He seems much happier and mom does too.