Tambo's Bag of Crafts and Traveling Crafts and Creations

Tambo's Bag of Crafts and Traveling Crafts and Creations is offering a free bag of crafts for posting about their products, so I thought I'd give it a try!  We LOVE crafts over here, and fly through crafting supplies pretty quickly.  It's always nice to get a box of ready-to-go crafts with instructions on how to complete them.  Sometimes, when we get busy, I loose my creativity :).  Here's some info about Tambo's Bag of Crafts and Traveling Crafts and Creations....

 

 

Tambo's Traveling Crafts and Creations is an all inclusive, on location mobile arts and crafts party/event provider, including set up (tables and chairs on request), all arts and crafts supplies, instruction as needed, clean up and everything in between. Tambo's brings the craft party to you! We travel here, there and everywhere to service birthday parties, play dates, fund raisers, sports events, school carnivals...where there's a space, Tambo's will be at your place! Decorate and embellish t-shirts, flip flops, silly socks, birdhouses, picture frames, baseball caps, wood snakes, the list goes on and on....Book your next event today for a funtastic artistic time creating your own personalized piece of art!

TAMBO'S BAG OF CRAFTS: We Send The Crafts To You!

Tambo's Bag of Crafts is filled with hours of messy creative fun for ages 3 and up

Tambo's sends here, there and everywhere right to your door

http://www.tambostravelingcrafts.com/Tambo_s_Bag_of_Crafts.html

1. Each canvas bag can be personalized with child's name (upon request)
2. All bags include 2 items, craft materials; glue, paint, paint brushes, markers, embellishments; stickers, pipe cleaners, rhinestones, ribbon, etc...
3. Each bag includes an extra surprise from Tambo's Treasure Chest

 

 

When we get our bag of crafts, I'll update with photos and let you know how the kiddos liked the activities :).

 

Oh Me Oh My Today I Hate GI

Today I brought Ramya to her 3 month GI follow up.  When we put her on the scale, I noticed she really didn't gain any weight at all since her last appointment.  The doctor brought up her chart, and she's back to not following her curve any more.  She's been home for a year and she has gained about 4 pounds (the average for kiddos is 5-7 a year I guess) and quite few inches, but for a kiddo who now has great nutrition and consistent meals after not having them for so long, they really expected better weight gain.  I would think the fact that she is gaining, though, and not losing weight, is at least a good thing.  She turns 7 tomorrow and currently weighs 32 pounds.

The doctor started talking about g-tubes and all kinds of not so fun stuff.  Bleh.  That's something I really didn't want to hear.  We are just not going there (of course I would if it was really, really, realllly necessary, but for now, we are just not going there).  We really need to get to the bottom of it.  There are just so many factors going on with her, it's hard to know what to think or what the best approach is.  First off, you have a body that isn't used to consistent food and nutrients.  She doesn't have those automatic responses she should.  She rarely says she hungry, and doesn't love to eat.  She eats a good amount, but because that is the expectation, not because that's what she wants to do.  If it was up to her, she'd eat a few bites and be done.  She also can take a long time to eat because she doesn't love it.  There have been days I've sat with her at the table for 1 1/2 hours per meal, multiple meals a day.  Then you have the RAD stuff coming in to play.  Ramya displays pretty much all of the classic RAD symptoms, though thankfully many are not to a large degree.  You can tell when she's starting to feel out of control, and boy does she like control.  She starts getting this nervous energy and just starts spiraling.  This usually leads to trying to control food by not eating.  I can usually spend time feeding her and giving her attention and we work through it, but it's a dangerous practice.  I really try to make eating fun, give her lots of choices so I can make sure that she likes what she is eating and feels in control of her food, and try to give her appropriate choices with food.  She eats a wide variety of foods, which is great.  She also is learning how to eat and enjoy consistent meals in appropriate portion sizes, which is a big adjustment!

The hard thing that I just do not understand, though, is why she isn't gaining more weight.  Maybe she just has a high metabolism, or maybe this is just the way she is, who knows!  It's hard because I'm still trying to learn who she is in so many ways.  I do feel like she should be at least staying on her own curve.  I try everything with her.  If I make a protein shake, she gets chia seed, flax seed, and avocado in it for extra fat.  If she wants chocolate milk, I make it from full-fat coconut milk (we are dairy free, and dairy seems to bother her tummy).  I try to get her to snack on nuts.  I mash avocados for her to dip things in for extra fat.  I cook everything for her in lots of extra organic unrefined coconut oil.  I don't just give her pancakes, I put butter, peanut butter (or sunflower nut butter), and syrup on her pancakes.  Her oatmeal gets coconut oil and walnuts in it.  I feed her sausage, bacon, hot dogs (nitrate free, natural ones, but still!) often, even though I'm not a big fan of processed meats.  I put butter on peanut butter sandwiches for extra fat.  And when she eats chicken, I load her up with skin and fat, which she loves.  I just feel frustrated because I don't know what else to try.  The doctors watch her so closely, which is awesome and I'm thankful for that, but at the same time, I don't want to make problems where they may not be, nor do I want to ignore something that may be a problem.  It's hard!

Ramya has a pediatrician appointment coming up soon, and I plan to talk to the doctor about underlying things that might be slowing her weight gain.  There may be things we can test, like her growth hormone, food sensitivities/allergies, etc..., and try to find some answers that way.  I know that her thyroid functions fine and she was negative for celiac (though we eat gluten-free anyhow), but there could still be other things going on.  I also want to chat with him about feeding therapy and attachment therapy to see if he thinks those may help at all.  Other than that, if any of you have any recommendations, please let me know!!  You can always e-mail me at jamie_lugo@hotmail.com or comment here :). 

Please be praying for wisdom and discernment (I know I say that often, so you can just keep repeating that prayer for me ;)) for us as we try to see if there is even a problem, and if so, what it is. 

 

MRI, Check!

This morning Madi and I left at 8:00 to go to Cardon Children's Hospital for her MRI to check for tethering.  The were scanning her head as well as her full spine.  We got to Cardons to check in at right about 9:00, which was a little early (make a note of that... we are never early!!).  They took us back pretty fast, and we were able to start the scan a little early, at about 9:45.  At first the anesthesiologist said I couldn't go back with her.  He said he doesn't like to divide his time and it would take attention away from her.  I assured him that I would stay out of the way and would not ask questions.  I told him I knew what to expect and that I had gone in many times before, even for surgeries.  He told me he has some moms trying to interfere or fainting.  I assured him that would not be me.  I also told him Dr. Moss had promised me I could go back.  He didn't love it, but he did decide to let me back.  I was thinking we were just going to have to leave and re-schedule with a different anesthesiologist, so thank God he changed his mind!  I held Madi's hand and sang to her while she fell asleep.  After one "Twinkle Twinkle" she was out.

They said the can could take as long as 4 hours, though I knew it would be less.  It ended up taking right about 2 1/2 hours.  They came and got me while she was still sleeping, and we let her sleep until she woke up on her own so that she would wake up peacefully.

 

 



When Madi woke up she was a little cranky and a little groggy but not too bad.  They were able to get the IV in her foot (yeah!) so that wasn't bothering her.  The only thing she was upset about was her thumb.  Having the pulse-ox monitor on her thumb and then having her thumb in the same spot for so long had caused a loss of blood flow.  Her thumb was a little purply and puffy.  They tried getting ice for it, but she didn't want it. 

After giving her a few minutes (and some water... she said no to a snack) they discharged us and sent us upstairs for an x-ray.  Madi has a programmable VP shunt, which gets programmed by a strong magnet.  Because the MRI machine is essentially a large magnet, it can re-set the level the shunt is set at.  We had to wait quite a bit, but then they called us back.  Right about the time we stood up, Madi looked at me and threw up all over myself and herself.  Poor baby.  We had skipped anti-nausea medicine because she said her tummy didn't hurt and she didn't want it, but we should have given it to her.  After throwing up, she felt much, much better and was back to her old self.  After the x-ray I took her to the cafeteria to eat.  It was almost 3:00 by then and she hadn't eaten all day!  She picked a hot dog with no bun, French fries, and chocolate soy milk.  She was very happy to eat and was able to keep her food down just fine.

We finally left there and made it home right about 4:00pm.  It was a long day!  Now we're getting ready to eat dinner and watch a family movie.  Relaxing just sounds good right now!

We won't see Dr. Moss until next week as he is out of office this week.  I will update everyone with results once we have them.  Thank you so much for your prayers, I know God was watching out for her!  Please pray that we get clear tests results and for wisdom, discernment, and clear direction for Dr. Moss, as well as for David and I. 

We have a new MRI date... Monday!

After some calling around first thing this morning, I hope to have all of the diagnosis/insurance/etc... information worked out for Madi's upcoming MRI.  The new official date is this coming Monday.  Madi will have a 10:15 scan, with a 9:15 check in, so we will leave at 8:15 am.  Though I'm happy to get to sleep in a little more, it's also harder on madi to go that long without food or drink, so please keep her in your prayers.  The scan is scheduled for 4 hours, though I think it will take only about 1 1/2-2.  I plan to call the hospital Thursday or Friday and make sure that they have all of the pre-approvals that they need this time.  Please be praying it all goes well.  Thank you!

So Frusted Today!!! Canceled MRI....

Well, today did not go like I planned!

At 4:25 today I got a call from Banner Cardon Hospital.  They were not able to get prior authorization from Madi's secondary insurance APIPA/CRS for tomorrow's MRI.  After doing some research I discovered that it's because CRS (the medical clinic Madi goes to for her appointments), who actually are the ones who put in for the MRI, put Madi's diagnosis as hydrocephalus.  APIPA/CRS wouldn't authorize it because her diagnosis was listed as hydrocephalus.  While Madi does, of course, have hydrocephalus, her main diagnoses are spina bifida (which IS what is covered by APIPA/CRS), Chiari II malformation, hydrocephalus, and epilepsy.  They do not see patients at CRS based on the diagnosis of hydrocephalus alone, nor does the insurance plan cover kids based on hydrocephalus alone.  Of course, they waited until most offices were already closed to call me, so now I can't get it figured out today.  I was able to get ahold of Dr. Moss's nurse, who said she would make some phone calls and get back to me, but at this point, it's 6:00 and I still haven't heard back, so I am guessing she couldn't get ahold of anyone and went home.  Though I know there must be a reason we are not going in tomorrow, and I trust in God's plan, I am just feeling frustrated with all of the fighting and miscommunication.  There is always a phone call to make, an office to talk to, something to fight for.  I am also dealing with trying to get Ramya her next Lupron Depot Pediatric shot (another long story) and am trying to fight to get Madi's Rifton Mobile Stander approved by insurance (another long story again), as she really needs a size medium.  I love my kids, and I will continue to fight so they can get what they need, but sometimes, it just makes me tired.  I also do a lot of prep work for appointments and scans, coordinating child care, shopping so I can plan diet-specific meals while I am away, preparing for the worst-case-scenarios just in case, cleaning the house so grandparents can come watch the kids, and all of that fun stuff.  I am so thankful for the energy and drive that God gives me, because that is what keeps me running this race!

I'll update everyone once we get another date set.  Thank you for keeping Madi and our family in your prayers, and please keep it up!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

- Isaiah 40:31

 

New Easter Wheelchair Decorations

I took the girls to Michaels to pick new wheelchair decorations and they both picked Easter-themed decorations.  For the first time ever, they both also picked similar decorations!  The main difference was that Madi wanted frilly green eggs at the top and chicks on the wheels, and Ramya wanted no chicks on the wheels and birds on the back.  They are very proud of their new chair decorations!  I actually decorated them about a month ago, but I'm just finally getting pictures up for all to see :). 

Madi's Wheelchair...

 

 

(It's hard to see but the ribbon is chicks hatching out of eggs)

 

 

 

 

 

And Ramya's decorations (she also had two adorable bunnies at the top of her handle bars, but they got beheaded when her chair was getting loaded, so I had to take them off)

 



 

 

 

 

Madi's Scoliosis Brace and Upcoming MRI Date

Last week we picked up Madi's first scoliosis brace.  She was very excited to pick up her brace and was even more excited to try it on.  She gave it a few kisses and announced that she "loved it." 

 

Madi with Ron Whiteside, our go-to guy at Hanger that we love

Then we brought it home, put it on, and she realized she loves her brace.... just not when it's on.  The first few days of having her wear it were a little rough, involving some tears from both of us.  Unfortunately it makes her body stiff, which throws off her movements and balance.  It's hard seeing her feeling limited in her mobility, as her movement is already limited.  I kept reminding her (and myself) that it would stretch out soon and would feel more comfortable, and that she would learn how to move around in it and get used to it quickly.  Ramya and Conner have also been encouraging her to keep trying, it's very sweet.  I am so very thankful for her amazing determination and positive attitude.  She really is adapting quickly to it and is doing very well.  I am thankful that she will never let anything slow her down, especially not an adorable little pink scoliosis brace!

Madi takes off her brace when she stands in her HKFOs, goes potty, and for a few little breaks here and there.  She also does not have to wear it while she sleeps.  Sometimes I'll notice she doesn't have it on and I will ask her what happened to it.  She will tell me, "I said, "bippity, boppity, boo, and POOF!  It disappeared!"", which really means, bittity, boppity, boo.... I used it as a door stop, mom...

 

 

Did I ever mention that she is creative?!?!?  Ha, I love that girl.   Yesterday I took Madi potty, got her re-dressed, and then told her she had a few more minutes and then she would need to put her brace back on.  I walked out of the room for a second and when I walked back in, she was wearing her brace.  Apparently Conner put it on her, correctly, and she was pretty excited about it.  He was pretty excited and proud as well.  He got the brace in the right place, and even had the straps buckled the correct length.  I was pretty impressed!  Here's a video of Madi explaining why she wears her brace...

 



 

In other news, Madi's head and spine MRI is all set for this Tuesday, February 25th.  We have an 8 am check in at Cardon Children's Hospital, so we will leave around 7 am.  She will have to be sedated and they said to plan for up to 4 hours, though I think it will be closer to 2 hours for the scans.  They are doing 4 scans, and set the estimated time at the max time for each scan.  Her little body just won't take that long to scan, though.  She will have to go NPO (nothing by mouth) and midnight. 

Please be praying that Madi handles the anesthesia well and that they are able to quickly and efficiently get the images they need.  Pray that the anesthesiologist will let me go back with her while she falls asleep, which is really huge for Madi's peace of mind.  Pray that she wakes up calm from anesthesia, as she usually wakes up very confused and angry.  Please also be praying for wisdom and discernment for her neurosurgeon, Dr. Moss, as well as David and I, as we determine if and when she will need detethering surgery.  If she needs it, I am hoping we can wait until May, when she is out of preschool.  Not only would it be summer break, but also, she will be homeschooling full time after that and we will be a little more flexible.  Our homeschool co-op, which she loves, will also be on break for the summer, so she wouldn't miss homeschool co-op.  I am also praying (and PLEASE join me in prayer for this) that her scoliosis isn't truly as bad as her x-ray looked (where she was sitting on her out-of-socket hip) and that doing the surgery, if we decide to go that route, will actually reverse her scoliosis so that she does not have to wear a brace any more, or at least not all day like she wears it now. 

Thank you for being our prayer warriors!!