We Love Sesame Place!

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What a fun-filled weekend this past weekend was!  Lots of celebrations…I love celebrations…I am happy to say that there’s always so much love surrounding them and good vibrations emanating from all over the place.  We are truly blessed. Among all of the celebrations I attended to this weekend, one in particular was Sesame Place’s Autism Awareness Day!

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Sesame Place is a kid-friendly amusement-water park geared toward children ages 2-13.  It has a variety of rides which kids can ride by themselves or accompanied by an adult if the child is too little.  They are located in PA about an hour and 20 minutes from Northern NJ and officially opens for the season this coming weekend.

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A friend of mine gave us tickets to attend this special event and we couldn’t have been more thrilled to go. Since we know how much our little one L O V E S Sesame Street, we knew this would be a major event for her.  She was certainly over the moon with excitement once we arrived. I wish you guys could have seen the expressions on her face. She was in heaven! This certainly was the perfect amusement park, for the best little girl. Later in the day, one of my sisters and two little brothers came to the park to join in on the fun which made the day even more special.

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It was a sun-filled Sunday, just the perfect day to be outdoors. As I looked around, I noticed every child was truly enjoying this magical day.  It was great to see all of those little smiling faces, running around, going on the rides, eating candy, meeting all of the characters and more.  Everything was so perfect! My little one finally got to go on rides for her size… and she was having a blast.

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We got to sit and watch Elmo Rocks Concert which was fantastic.  She was totally enjoying and rocking to the beats of Elmo, Cookie Monster and friends. She also got to say hi to Elmo and take pictures with Cookie Monster and Abby…her favorite characters!  And to top it off, she got to see ALL of the characters during their wonderful 20 minutes closing parade.   She truly had the time of her life.  We can’t wait to bring her again once the water rides open…that will be another amazing experience.

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This day was just so wonderful overall.  Seeing her beautiful face lit up throughout the entire day we knew we made the right choice when we accepted those tickets.   If you are close to PA or willing to take an hour plus ride, I would suggest you take the kids. While we were there we ate at the Cookie Monster Cafe where each kid got to take home a super cute Cookie Monster Plate and Drink Cup as a souvenir.   My only suggestions would be to try to eat a good meal before arriving at the park. The food there is expensive and not the healthiest.  Other than that I can assure you, your children will have a great time!

There is a Groupon deal going on right now. Go HERE to view.

Hope you enjoy looking at the pictures of our Sesame Place Adventure!

Xoxo

Kari

Our Healing Journey-Hooray for a solution to the problem!

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This is super exciting news as we finally got an answer to what the problem is and can now really get Jaxson on the right track! We went to the neurotologist (not to be confused with neurologist) this past Monday for the glycerin dehydration test I mentioned in my previous post, in order to determine if Jaxson’s balance issue is due to an imbalance of fluid in the inner ear. Indeed, this is the issue with his balance and seems to have been all along. The testing was 3 hours long and consisted of a few preliminary balance/coordination examinations, however, the main assessment of his balance that was used throughout the 3 hours at different times, entailed having Jaxson place his feet together while standing and closing his eyes. Jaxson immediately wobbles and falls to one side or the other while doing this normally.

After the preliminary assessment, Jaxson was then given the glycerin solution which is essentially just sugar, a really sweet drink. Jaxson was disgusted by it and I almost had to force him to take it. The glycerin kicks in and his balance is retested in the same manner. Wow! Significant improvement in balance this time around (about an hour post ingestion). However we wait another 45 minutes before his balance is retested for a third time while the glycerin is still active, and voila! I’m going to have to call the results a miracle! Jaxson, in the midst of crying hysterically because he was so thirsty (you can tell by the picture how miserable he was during the testing) was able to stay fully balanced with his eyes closed for almost a minute I would say. We would have kept him in that position longer but his pleading for water got so annoying; all I remember was the doctor and nurse looked at each other with a smile. They smiled because they had figured out and could now confirm that the issue is an imbalance of the inner ear fluid. In medical terms this condition is called endolymphatic hydrops. Basically we don’t know the cause as it seems 50% of the cases are caused by trauma to the inner ear and the other 50% (which involves Ménière’s disease if I’m not mistaken) is sporadic (pretty much meaning, there is no known cause). Nevertheless, I’ll take a wild guess and point to my friend Gentamicin as the main culprit once again.

Again, all blood work we have done has come back negative/normal which is great but if my memory serves me correctly I remember the nurse from one of the many specialists’ offices we took him to mention that the electrolytes were a little low but most likely because he had not had any water or food before the blood work which makes sense, however, reading about endolymphatic hydrops just last night, I’m thinking I’m going to have to look into this a little further.

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Perhaps the hydrops have nothing to do with the Gentamicin damage although we know the hearing loss was definitely a secondary effect of same specially considering the fact that Jaxson passed his newborn hearing screen before he left the hospital as a newborn, needless to say the neurotologist concurred and even wrote in his notes that the Gentamicin most probably caused the hearing loss.

Now, as for the hydrops, and back to the point I was trying to make above regarding the possible slight imbalance in the electrolytes (I will call the doctor’s office to find out the exact results regarding the electrolytes. I know it was something very slight as she only briefly mentioned it in passing and automatically attributed it to him having fasted for the blood work, but now I’m curious and need all the facts so I will call them today to get all the details and will inform them of the results from the neurotologist’s testing).

More importantly, what I’m going to do is compile all the different tests and information I’ve gathered since we have an appointment with a well-known integrative, holistic medicine doctor in the area in February. I’m thinking with the indicated solution the neurotologist recommended which is to give Jaxson a diuretic called Lasix to restore his balance, and with the proper diet to restore electrolytes, etc that may be low in his body, through the help of the holistic Doctor and her in-house nutritionist, we got this! Jaxson may become superman out of all of this.

I’m just so grateful there is a solution to the imbalance. Thank you so much GOD/UNIVERSE!

I will update you all on how he does as soon as he begins his Lasix treatment and anything additional. Jaxson is also currently receiving physical therapy outside of school and will begin occupational therapy as well to fully catch him up and strengthen his balance and coordination which I suspect will significantly improve with the lasix alone which may in turn shorten the terms of the therapies in general.

Thank you for reading!

Much Love,

Belmax Saki

Our Healing Journey-He is genetically perfect!

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So, Jaxson’s neurologist literally just called me about 30 minutes ago to inform me that the spine MRI came back normal, for the exception of the cervical part of the spine which revealed the same enhancements as the brain MRI done in November; because the spinal cord and brain stem are all connected, specifically to this part of the spine (cervical/neck) as per my understanding, this makes absolute sense. I may not be remembering all the details correctly but the bottom line is that the spine MRI was normal.

The neurologist would like to see Jaxson in one month and may request another brain MRI to see if there are any changes, including the resolution of these cranial nerve enhancements. He mentioned that the new MRI may show no more enhancements as these enhancements could have possibly been the result of his body fighting something at the time and not indicative of any disease or anything alarming.

Jaxson has gone to an innumerous amount of specialists the past 1.5 months and has had a remarkable amount of blood work done, including all the genetic testing I previously mentioned, which in the back of my head I was so afraid about. I’m not sure why I was so afraid as I am a huge proponent of epigenetics (have read a couple of Dr. Bruce Lipton’s books on this). Nevertheless, all genetic/blood work came back normal Thank God! Jaxson is genetically perfect!!!

All this new information however, brings me back to my battle with Gentamicin. To be honest, I have not researched Gentamicin extensively and I’ve only come to know about the evils of this antibiotic. I will be fair though and will look up the “pros” of this crazy antibiotic that hospitals love to administer, and which is known to cause sensorineural hearing loss and imbalance, etc., by affecting the 8th cranial nerve/vestibulocochlear system. Mind you, the main enhancements that Jaxson’ s MRI revealed, were to the 7th and 8th cranial nerves which not surprisingly are side by side and which share information to the best of my knowledge; hence if one nerve is affected I’m pretty sure it could impact the other one as well.

Finally, in the span of the past 1.5 months, one of the specialists Jaxson saw was the neurotologist which I mentioned we would be seeing in my previous post, and who seemed surprised and was not happy about the fact that Jaxson had been given Gentamicin as a newborn. The neurotologist did some preliminary testing, including spinning Jaxson in a chair, which did reveal that his vestibular system is compromised which we already know is the main contributor to his lack of sustained balance. Anyway, the neurotologist suspects the issue may be an imbalance of the inner-ear fluid which he will determine through a three hour long test where Jaxson will be given some glycerin. I need to find out the exact details of what this testing entails and what our next options are if this is in fact the issue.

Thank you so much for caring about Jaxson and sending your positive thoughts our way. We will get to the bottom of it and Jaxson is doing great. Getting smarter, stronger, and bigger by the day.

Wishing you all an Amazing New Year!!!

Much Love, Belmax

Christmas Craft Ideas For The Kids

As Christmas Day approaches we are all running around getting some last minute gifts and thinking of ideas on how we’ll entertain on Christmas morning, especially the kids.

We will be making a delicious breakfast for the our families, opening gifts and doing some arts and crafts with the children. I went out and got some arts and crafts kits that will surely keep the kids entertained and happy. We’ll be making a gingerbread house, decorating some sugar cookies and making Christmas ornaments.

As I was doing some web browsing I did come across some pretty awesome ideas I might be incorporating into our arts and crafts time. Check them out! Click on the picture to get the instructions.

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This is a super cute paper plate Santa…It looks fun and easy to do with the kids and doesn’t require too many items.

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PAPER BAG RUDOLPH THE RED NOSE REINDEER

What’s Santa without his favorite Reindeer..Rudolph! This is a super cute – easy to make paper bag Reindeer.

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WOODEN STICKS AND COTTON BALLS SNOWFLAKES

Super super super easy to make Snowflakes! Can’t go wrong with these.

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WINDOW CHRISTMAS TREES

Kid’s love to be part of everything….this is a great way to have them make them that will be part of the Christmas decorations. How fun!!

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We hope these arts and crafts ideas make your Christmas Day with the kids an easy, fun and happy one!

We wish you all a wonderful Holiday Season!

Merry Christmas!

Because We are Moms

Breakfast with Santa – 2014 Guide

What is Christmas if you don’t BELIEVE…specially on the big white bearded man in the red and white suit!  As we all know Santa Claus is a big part of Christmas celebration and without him it would just be simply strange and boring. So for those of you who play on the tradition of Santa Claus I am sure you will love to know where you can take the kids to have “Breakfast with Santa.”  My sister and I took our kiddos to one last year and it was super cute.  The kids get to take pictures with Santa, do arts crafts, play and eat.  It was a fun little outing and a great experience for the children.  So in case you are interested in some “Breakfast with Santa.” There are many going on and here is a list of some that I found in our area.

Christmas is about the kids….let’s make it as fun as we can and keep the spirit of Christmas ALIVE!

 

BREAKFAST WITH SANTA!

The Sea Grill or Rock Center Cafe

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Enjoy a fabulous time at the Sea Grill or Rock Center Café while having breakfast with Santa and his elves.  All kids receive a special gift from Santa and families enjoy VIP admission to the staking rink.  Reservations required.

Where:       The Sea Grill at 19 West 49th Street and the Rock Center Café at 20 West 50th Street, NY, NY

When:         Dates and times vary. Visit the website for the complete schedule.

Cost:            The Sea Grill: $110-$140 for adults, $75-$95 for children under age 10

Where:       Rock Center Café: $80-$125 for adults, $50-$85 for children under age 10

Macy’s

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A classic holiday tradition Breakfast with Santa at Macy’s at Stella 34 Trattoria and Bar.

The magic begins on November 29 and continues until Christmas Eve.

Reservations required – Space is limited.

When:        November through December (see below)

December 13 at 9 and 10:30am

December 14 at 9am only

December 20 at 9 and 10:30am

December 21 at 9am only

December 22, 23, 24 at 9 and 10:30am

Where:Macy’s Stella 34 Trattoria & Bar 151 W 34th Street 6th Floor, NY NY

Cost:$40 children, 3-10 years, $55 adults

Contact:212-967-9251

Website:http://www.patinagroup.com/stella_bws/

Ages:3-10 years

Breakfast with Santa in Old Tappan

Enjoy a small breakfast sponsored by the Woman’s Club of Old Tappan. Take pictures with Santa and delight in a fun- filled time with arts and crafts, games, goodie bags and more.  Reservations required.

When:          December 6, 2014 at 9:30 AM – 11:00 AM

Where:         Old Tappan Fire House, 231 Old Tappan Road, Old Tappan

Contact:       201-750-7365

The Bernards Inn

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Delight in an extravagant Breakfast with Santa at The Fenwick Ballroom. The children will also get to indulge in a desserts table.

Featuring a Traditional Gingerbread House by Executive Pastry Chef Elizabeth Katz will be on display.

When:            Sunday, December 14, 2014 at 9:30 AM to 2:30PM

Where:           The Bernards Inn – 27 Mine Brook Road, Bernardsville, NJ 07924

Cost:                $39 Adults, $20 Children, fee under 2

Website:        http://www.bernardsinn.com/inn-events/136-sunday-breakfast-with-santa

 

At Imagine That

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Bring the kids and enjoy a super fun breakfast with Santa and his elves. Each child receives a special gift from Santa. Oh what fun you can take a picture with Santa too!

When:              Saturday, December 6, 2014 at 10:00 AM Repeating every 14 days through December 21, 2014

Where:             Imagine That!!! A NJ Children’s Museum  – 4 Vreeland Road, Florham Park, NJ 07932

Cost:                  $13.99 for adults, $15.99 for children

Contact:           973-966-8000

Website:         Imagine That

Fred & Ethel’s Lanternlight Tavern

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Enjoy a buffet breakfast and picture with Santa at Fred & Ethel’s Lanternlight Tavern. Reservations accepted.

When:           Saturday, December 13, 2014 at 9:00AM (Repeating every week s through December 20, 2014)

Where:          Fred & Ethel’s Lanternlight Tavern 1 North New York Road, Absecon, NJ 08205

Cost:               $14

Website:       http://historicsmithvillenj.com/towne/events-festivals/25-breakfast-with-santa/event_details

 Camden Children’s Garden

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 Children’s tickets include brunch, printed photo with Santa, free ride on carousel and train, holiday crafts. Reservations must be made in advance. Tickets are $26 per person, $20 for members. Children 2 and under free.

For more information, please contact the Camden Children’s Garden at 856-365-8733 or info@camdenchildrensgarden.org.

When:          Saturday, December 6, 2014 at 10:00AM to 2:00PM Repeating every week through December 13, 2014 (two seatings 10am and 12pm)

Where:        Camden Children’s Garden 3 Riverside Drive, Camden, NJ 08103

Cost:             $26

Contact:      856-365-8733

Website:     http://www.camdenchildrensgarden.org/events/

Los Amigos

Los Amigos is hosting its Annual Breakfast with Santa! For more information call 856-767-5216 or visit our website www.losamigosrest.com

When:       December 7, 2014 at 9:00Am – 1:00PM

Where:      Los Amigos 461 Rt. 73 North, West Berlin, NJ 08091

Contact:    856-767-5216 or info@losamigosrest.com

My favorite time of the year…The Holidays! Gift Guide For The Family 2014

My favorite time of the year is almost here! The Holidays! Thanksgiving, Chanukah/Hanukkah, Christmas, Kwanzaa, etc., all revolve around happiness, love and peace for one another.  A time when we focus on all of the blessings we have received throughout the year and take the time to be grateful; a time that is filled with Love, Laughter and Magic! It is a time when we forget the everyday hustle and we focus on celebrating, giving, family and friends.  This time of the year really fills my heart with JOY and it should be like this all year round!

Friends and family find the time out of their busy schedules to see each other and spend some quality time.  Holiday parties all around.  And who can forget the exchanging of gifts to show appreciation for one another.  It’s just a joyful time!  I have always loved giving to my loved ones and this time of the year makes it even more fun!  But I know that it can also take a toll on our pockets which is why I have compiled a few gift ideas that are for every pocket size and can help you in choosing gifts your friends and family will surely love.

Gift ideas for the kids:These handmade crochet items are unique, stylish and one of a kind.  Can be made in the color(s) and size of your choice.  There are hair-ties (crochet balls), hair-clips made with crochet flowers and embellishments, headbands, hats for boys and girls (can be made in any size), blankets for babies or toddlers, and more. Price ranges from $6-$70.  Items such as the hair-clips, hair-ties, headbands make perfect stocking stuffers! You can shop directly through JBlueCreations

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Gift ideas for the women in your life:  When gifting something to your mom, grandma, sister, friend, child’s teacher or any special woman in your life, you can never go wrong with accessories! These crochet essentials (scarves, hats, ear-warmers) will never go out of style and can be made in their favorite color(s).  And jewelry?! You know you’ll make that lady very happy!  With the variety of items Stella & Dot has to offer from beautiful and simple studs, rings, and bracelets to statement pieces, wallets, purses and more… You can also give it a special touch by getting them an engravable necklace and personalizing it with a sweet word or special date. Prices vary from $12-40 for the crochet items and $19 and up for Stella & Dot – There a gift idea for every pocket size.

 

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Gift ideas for the men in your life: Men love accessories too and we have the perfect items! A beautiful and delicate crochet hat, scarf or scarf and hat set in a neutral or bold color, whatever his preference or a beautiful set of personalized cuff-links from Stella and Dot will give him the perfect accessory touch.   Crochet hats, scarves and scarf and hat set range form $15- $40 and cuff-links are $95 (engraved) .

 

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In celebration of the Holidays I would also like to give back to a family I hold dear and have been following for over a year now.  The Halstead family’s then two year old son Tripp was involved in an accident, where a tree limb fell on his head and crushed his skull.  The doctors did not think he would make it, but the strong and brave little boy pulled through. And now two years later he is making progress with the help, love and dedication from his parents.  I have created a Stella & Dot online Trunk Show for which as an independent stylist, I will donate 95% of my commission of the sales to the family, which will contribute to the continuous recovery of Tripp.  So when doing your Holiday shopping please consider shopping through the trunk show as your purchase will make a difference in Tripp’s life this Holiday Season!

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*You can follow Tripp’s journey via his facebook page www.Facebook.com/TrippHalsteadUpdates

Hope this post makes your Holiday Shopping a breeze this year!

 

XOXO

Kari De Jesus

Our Healing Journey: Appointments

Today (11.17.14) we had 3 different appointments. The pediatric orthopedic that we saw last week recommended we see a physiatrist and go for a physical therapy evaluation to see what Jaxson’s needs may be from a physical therapist standpoint. So, our first appointment today was with a physical therapist named Alexandra at Mountainside Children’s Hospital. We are also trying to schedule an appointment with a physiatrist as soon as possible but that takes a little longer as they are booked from what I was told; however, physiatrists  work closely with physical therapists and from meeting Ali today I feel that we are in pretty good hands in that regard.

Ali asked me a bunch of questions and ran several tests on Jaxson, particularly, she tested his vestibular system functioning which I greatly appreciated as I’ve been trying to tell all these specialists (the gazillion ones I feel we’ve already been to) that the problem is coming from his vestibular, inner-ear systems as having been damaged by the gentimicin. They mainly ignore me. What do I know? I’m just a worried mom who has lived with my child from birth and saw the massive unnecessary medical intervention he underwent because I developed a slight maternal fever during labor. Crazy newborn intervention needs to stop.

Crazy interventions during labor in general need to stop as well. The Business of Being Born documentary portrays all that can go wrong when an uninformed mother to be like me at that point in my life, goes into labor. I experienced this first hand. I was strapped to a bed as soon as I got to the hospital and given only ice to eat for almost 20 hours. WTH? I felt great, what was the problem, why was I strapped to a hospital bed from the moment I got there and immediately given pitocin without my knowledge. “Hospital policy” I was told. You can’t walk around because the baby could just fall out. hahahahah!!! Seriously, wouldn’t I have to push?  Anyway, what a nightmare that was. I rather just focus on positive things and not re-live that experience in my mind. Mind you, I was a super healthy 26 year old with a beautiful, perfect pregnancy throughout and just made my way to the hospital because my water broke and excitement told me, “rush to the hospital”. Bad idea, I should have probably stayed home and waited until contractions began at the very least.

They took Jaxson’s temperature rectally about 3 days after he was born as their “routine nurse check up” while doing their rounds (we were scheduled to be in the hospital for 4 days since I ended up with a c-section not surprisingly, although I did request the c-section). Anyway, I specially remember our room being extremely hot on this particular day and I had Jaxson perhaps a little too bundled. The temperature was 100.3 rectally, which is technically not considered a fever by most medical standards, that’s actually right at the cusp, and they should have retested his temperature before hooking him up to an IV again with Gentimicin. The first 3 days he was automatically given gentimicin because of my “slight maternal fever”.  They began running a bunch of test to see if there was an infection. These tests included a spinal tap which his father and I vehemently objected to no avail. Again, all tests results came back within 2-3 days negative but they continued to give my newborn gentimicin for a total of 8 days and wanted to keep him an extra two days on the drug. We refused and had to sign a waiver to release him from the hospital. I often wonder if those extra two days would have made him completely deaf. However, since he passed his newborn hearing screening (as gentimicin can take months to show any side effects) and he met all his milestones on time, Jaxson’s severe hearing loss was not confirmed until he was about 3.5 years old (I began inquiring about his verbal development not being up to par when he was about 2.5 years old, and it took me a year to finally have an audiologist confirm that I was indeed correct, he has hearing loss) and given the fact that he received his hearing aids by the time he was almost 4 years old which is super late, he is verbally almost at age level and continues to improve. I believe my child was born perfectly fine and I hope that all the genetic testing we have to do soon come back clear.

Alright so back to the appointments now that I’ve shared a little newborn medical history. Ali, the physical therapist informed me that his vestibular system was definitely not working to its full potential and that based on the fact that he has sensorineural hearing loss, she already suspected that regarding his balance issues. She explained that he clearly has balance issues but that on top of that, his hamstrings are very tight and so are his heels. He is pronating his feet as he is flat footed, one leg is slightly longer than the other, and he is a little low muscle-toned. Geez! She will have her report ready as soon as possible which will include a recommendation for physical therapy twice a week targeted at strengthening his other senses in order to compensate for the vestibular/inner ear dysfunction which directly affects balance and he needs inserts/orthotics for his feet.

Immediately after this appointment, we headed back down to Princeton and made our way to the chiropractor’s office. He quickly assessed Jaxson, stated that one leg was slightly longer than the other and hence he was not in alignment. He adjusted Jaxson and put his legs back into place. The legs are now symmetrical and I actually did see the difference which made me feel a lot better.

After the chiropractor, we drove down to Jaxson’s school where I had a meeting with his teachers, the school director, case manager from our school district (Jaxson attends a private auditory/oral pre-school for the deaf and hard of hearing- he will transition into the regular school system next Fall), physical therapist and occupational therapists. He has physical and occupational therapy in school once a week for 30 minutes.

I was very grateful for the school meeting. I had sent them a copy of the MRI and expressed all my concerns at the moment although we still do not have a diagnosis. We do not know what the underlying issue may be and a meeting was put in place by the school immediately in order to discuss things with me.  Well, Jaxson’s private school had their radiologist look at the MRI and it is my understanding that the MRI looked normal to him Thank God. The enhancements to some of the cranial nerves may have been there since birth and not necessarily indicative of any disease, especially if there is no basis to compare the MRI to, there is no previous MRI. Then the school’s director asked if his EARS have been check for an inner ear, fluid infection. We already know Jaxson has had a history of fluid in his ears and repeated infections. Ear infections that cause no fever and therefore it’s hard for me to know. I was so worried that my first step was the ER instead of the ENT. Anyway, this gave me a sense of relief and I’m hoping this is the case and not something more serious. If I remember correctly, the Princeton school system also had their own specialist look at the MRI with a similar opinion.

The school director got on the phone immediately with the school audiologist to get her recommendations for my next step in this puzzle. In the meantime, I scheduled an ENT appointment immediately. The school audiologist called me and suggested that Jaxson be seen by a neurotologist to address everything that may be causing the imbalance. I must say though, Jaxson’s balance has stabilized for the most part with a few falls here and there, mainly when he is running fast. However, when the falls were worse, he did have a cold and was pretty congested which could really make sense regarding the fluid in the ears. Aside from making the neurotologist appointment, the audiologist suggested that it could be labyrinthitis and that I need to rule all these things out. I looked up labyrinthitis and that seems very possible as Jaxson has recently complained of nausea, specially while riding in the car. His teachers also expressed that his balance is usually a bit worse when he wakes up from nap and then stabilizes. Could it be because while he is sleeping the fluid builds up more to one side? I also think it has to do with his hamstrings being tight and having to warm up as he wakes up and walks around. Maybe a combination of both?

Thank you for your positive thoughts and support while we figure this all out for the best possible outcome.

Much Love,

Belmax

*You may click on highlighted words for more information.

 

Our Healing Journey

IMG_0185I’m not sure when the falls got suddenly worse but his balance had always been a bit off. Some-time in October of this year though, we had a birthday party for a friend’s son’s 5th birthday and that’s when I decided enough was enough. I knew Jaxson had been falling a lot recently but watching his legs suddenly give when he was trying to complete any physical game activity while at the party, finally set my panic button off. I could not wait another 3 weeks for his orthopedic appointment I had made earlier in the week.

I had already gotten a teacher’s note the previous week, stating that during a scavenger hunt game with Jaxson she noticed he fell at least 5 times for no apparent reason. Also that same week he had fallen on his face off the bus as he was being dropped off at the after school program. As his mother I’m sure you can imagine the pain and frustration this was all causing me but again, my panic button had not fully gone off until the day of the birthday party. I excused myself early from the party; we had literally been there about a half hour.   I got us in the car and called my mother. I told her that I was taking him to the hospital.

Mind you, Jaxson was not complaining of his falls but when I would ask him what was happening he would respond that his legs were acting funny and they would just fall on their own, almost as if they had a mind of their own; something that he obviously could not control he felt.

We got to the hospital’s emergency section and were attended to fairly quickly. I must admit I was a little apprehensive of the first doctor that came in to examine him as she looked very young and as non-judgmental as we all try to be, it’s hard to assume that such a young doctor could have a lot of experience. However, I may have underestimated her expertise as it seemed she was finally helping us uncover whatever underlying issue this may be. She asked some questions, did some of the preliminary physical type testing most doctors do, and came back with another doctor for a second opinion. This time the doctor was older (I know, I know this shouldn’t matter) but at that moment that made me feel better. He repeated some of her testing (looking through Jaxson’s eyes with a light, etc.). Then he had Jaxson do some regular walking,  running, walking on a straight line, jumping and so on to assess his balance.

They left for a while and the initial doctor came back with some information and instructions. She told me this was not a diagnosis but that they didn’t believe the issue was an orthopedic issue but rather a form of ataxia and that we needed to see a pediatric neurologist as soon as possible to get to the root of all this.

It was a Sunday when I took Jax to the ER and the following day, I called the neurologist’s office as instructed and made Jaxson an appointment for as soon as possible.

I kept him from school for several days as I was afraid to send him and have him keep falling. My mother came down to stay and help as I had to go to work.

The neurologist’s appointment finally came and I felt very good about the neurologist. He gave me the sense of being a top neurologist and at the top of his profession. Anyway, he did some testing on Jaxson, similar to the ones in the ER and asked me many questions about the history of his development.

Toward the end of our visit with the neurologist, he stated that he believed this was a coordination issue and agreed with the ER doctors that perhaps it was a form of ataxia. He indicated that we needed to do an MRI as soon as possible to find out if this was indeed the case.

I scheduled the MRI as soon as I could all the while resisting the urge to Google what this ataxia thing was all about. Gosh! I thought, Jaxson and I have already been through so much. First his hearing loss which I still cling to the fact that it was induced by the gentimicin given at birth. Even if it was not necessarily induced by the gentimicin, it was definitely precipitated by it if there is any “genetic” predisposition going on. I just wanted to crawl into a hole and cry myself to sleep. I probably did now that I think about it. Having children is really hard and I imagine it is even harder as a single mother. Regardless though, I’m not going to sit here and feel sorry for myself and as a good friend told me during those days, “just do the MRI and find out what the issue is so that you can resolve it” and I intend to do just that.

We scheduled the MRI and in the midst of all this, the orthopedic appointment I had made prior to bringing him to the ER came up; and even though the ER doctors and neurologist did not believe there was anything wrong in that regard, I still felt he should see the orthopedist. His father and my mother took him to that appointment. As it turned out this orthopedic which was referred by his pediatrician is not even a pediatric orthopedic but rather just a regular one or an adult orthopedic for that matter. However, he still did examine Jaxson and even ordered X-ray’s right on the spot. His notes indicated that Jaxson had one leg slightly longer than the other with possible right hip dysplasia and possible slight scoliosis and we should consider possible mild cerebral palsy. Jesus Christ! To top it off he stated that he was not a pediatric orthopedic and that we should take him to one for a proper evaluation. I proceeded to make an appointment with the pediatric orthopedic and made it to coincide with the day of the MRI results appointment with the neurologist.

On the day of the MRI, I had the bright idea of asking (since Jaxson was already going to be put down for this MRI) if they could also do an MRI of his hips as he was going to be seeing a pediatric orthopedic soon and the orthopedist may ask for this. This inquiry set off a whole range of opinions and events. They told me “Well, you can’t really ask for this on the spot; the technician can only go by what is on the ordering doctor’s script; the insurance needs to authorize this before-hand and they don’t do this on a same day basis; well what if the orthopedic wants an MRI of his knees instead,” etc. As calm as I could, I said “ok, I’m calling the neurologist now to add the hips to the script immediately and to have his people call my insurance to get this authorization; I’m not having my child be put under twice if we can do this in one shot.” It got done, I was able to coordinate the brain and hip MRI for the same day and the test took about an hour and a half to complete.

I had forgotten about the word ataxia or at least tried my hardest not to focus on it and just pray that this was nothing or at least something really simple or at least something related to the vestibular system which is what the gentimicin affects which is part of the inner ear/cochlea. The vestibular system also controls balance. Jaxson’s vestibular apparatus still has not been assessed for proper functioning which is one of our next steps.

The night before getting the results of the MRI, I opened my periodforgood monthly box and unbeknownst to me, the charity I’ve donated to for the month through my monthly subscription has to do with a brother and sister with a form of ataxia. I hope for the best for them and send them lots of love and light. I found this alarming though and it did send me into a Google frenzy when I read about their story on the periodforgood card.

Well, the next morning we go for the MRI results and as it turns out the MRI was not good and does indicate this possible dilemma of the Ataxia or it could even be something as “simple” (for lack of a better word) as a vitamin E deficiency. The next step is to go for genetic testing. But what I found most interesting during the appointment with the neurologist that day, was that Jaxson did two things he had never done. Aside from him being overly rambunctious and energetic, at one point while the doctor was telling us the results, he took his two little index fingers and covered my ears; he put his fingers deep in my ears in order that I would not listen to what the doctor was saying. He then proceeded by taking off his hearing aids and telling me “see mommy, I don’t need this, I can hear.” My little Ganesh! He is so smart, perceptive and intuitive. I just love him. Also, we met with the pediatric orthopedic who evaluated him later that same day; looked at his hip MRI and informed us that Jaxson was a healthy boy; bones are great, hips are perfect, and spine is aligned.

Thank you all for your love and support and for sending positive thoughts our way as we uncover all the steps in our healing journey.

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Much Love,

Belmax

Halloween Costumes to die for!


Having a Birthday that falls so closely to Halloween has led me to always having Costume themed birthday parties. It is so much fun getting to dress up, enjoy the holiday and your birthday celebration all at the same time! I have truly enjoyed Halloween since I can remember and have had my share of awesome costumes. As a lover of this holiday I definitely look forward to seeing my daughter enjoy it as much as I do. I can already see her following in our footsteps (my hubby loves Halloween too). Last year my little one was a little pirate…OMG she was the cutest little pirate ever! She was so good with her costume too. She kept the bandanna on the entire time we took her trick or treating and carried her little sword and she wasn’t even 1 and a half.

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My Little Pirate Girl!

We have yet to pick the “perfect” costume for her this year. There are just so many creative and super cute baby/toddler/children costumes that it is so hard to pick just one. I love the creative parents who take the time to make some seriously awesome costumes….I wish I was that creative Hahahaha. Check out some of the adorable, super cute, super creative costumes I have come across while surfing the net! Hope you like them…maybe it’ll help you choose one for your little one if you haven’t yet. I’m sure this Halloween she will help us pick out another great costume for her.

My Favorite! 

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These are some serious costumes!

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Love them!

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Cutie Patooties!! 

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What is/are your kid(s) going to be this year? Would love to hear what fun ideas you have in store.

To get direct links to these costumes and see more adorable picks, check out our pinterest page. 🙂

xoxo

Karinita

I am guilty of Co-Sleeping with my child: 10 Things I Love and hate about co-sleeping  

While some moms refuse to let their child co-sleep with them and believe it is against all good-parenting habits, I know other moms out there can relate and will understand every reason in this post.  I know I’m not alone.  I am not the first and I can assure you I won’t be the last mom who co-sleeps with their child. Co-sleeping with my child is absolutely a bitter-sweet experience which is why I have compiled my top ten reasons why I love and hate co-sleeping with her.

 

Why I love co-sleeping with my child:

 

  1. FIRST TIME MOM FEARS: As a first time mom I don’t think I slept more than 15 minutes at time at least for the first 3 months (until she was bigger and I felt more secure bringing her to the bed) In fear that I wouldn’t hear her crying if she needed me. So I would startle myself every 15 minutes like a crazy woman to check on her and make sure she was breathing.

 

  1. BREASTFEEDING MADE EASY: My daughter breastfed constantly so if I ever wanted to get just a little bit of rest, laying her right next to me in bed to feed was the only way she could get her feeding every 2 hours and mommy could get some eye-shutting time.   Initially, I did try getting up every 2 hours and getting her from her crib, feeding her for 20-30min, putting her down, and doing it all over again within 1 ½ – 2 hrs.  It was exhausting, especially since I had to get up and go to work in the morning. If I wanted to function at work, this was my best option.  Happy child, happy mom!

 

  1. KNOWING SHE’S SAFE RIGHT NEXT TO ME:When she was a baby I would prop her up on a firm pillow so that I could be slightly lower than her and I would put the little dividers that go by the torso so that she wouldn’t roll over.  With daddy on the other side, I knew she was nice and perfectly cozy.  I could open my eyes and check on her right then and there.

 

  1. GETTING HUGS IN THE MIDDLE OF THE NIGHT:  Now that she’s older she loves to cuddle with mommy or daddy and gives us hugs or kisses in the middle of the night or to wake us up.  They are the best!

 

  1. SEEING HER BEAUTIFUL FACE AS SOON AS YOU WAKE UP: Seeing her tiny, gorgeous, peaceful little face right next to you as soon as you wake up totally makes my day.

Why I hate co-sleeping with my child:

 

  1. FEAR I WOULD CRUSH HER (WHEN SHE WAS A BABY) AND NOT SLEEPING NOW THAT SHE’S BIGGER: Although I made sure she was positioned in a way where she had her space and wouldn’t roll over and get crushed by us, there was still that little bit of fear that we could hurt her in any way, so I did put her in her crib most nights, even if I had to get up 3 or 4 times to put her back to sleep. Now that she’s bigger, although I love having her next to me, I can barely sleep through the night because she moves so much.

 

  1. MAKES IT REALLY HARD FOR THE HUBBY AND ME TO HAVE OUR ROMANTIC NIGHTS:  Love nights are essential for mommy and daddy, but making them happen is almost impossible. When you have accustomed your child to sleep with you it’s hard to get her to sleep in her own bed.  So on those miracle nights when she wants to be in her own bed, we definitely take advantage of the opportunity hahaha.

 

  1. GETTING KICKED IN FACE IN THE MIDDLE OF THE NIGHT:No one likes to get kicked in the face while they are sleeping, but when you have a toddler sleeping next to you, you better be ready for it.

 

  1. BEING AWAKENED IN THE MIDDLE OF THE NIGHT ASKING FOR WATER OR MILK:  Every night I have to hear “mommy I want ‘leche’ (milk)” or “mommy I want ‘agua’ (water). I have to get up and go get her leche or agua.  I have recently started to ignore her and tell her to go back to sleep.  We need to break these bad habits! Anyone else’s child ask for water in the middle of the night, every single night?

 

  1. FEAR OF HER NEVER WANTING HER OWN BEDROOM, EVER!:  We will be moving soon and she will have her own bedroom.  Because we have created this habit of co-sleeping, we are definitely afraid she won’t stay in her own bedroom. I will probably do a follow-up blog post on how this transition goes.  Wish us luck!

 

So there you have it, my love-hate relationship with co-sleeping with my child.  I know some moms out there have gone through the same situation or are going through it.  I want to hear your thoughts and ideas on how to make the transition into her own bedroom and bed a fun smooth one.

 

Xoxo

Karintia

Tiny Prints Cyber Monday