Back to the BRACES

Last week was filled with two orthopedic appts down at CHLA. A very RUDE awakening for us!!

Leilla has two months to wear these braces and see some improvement in her legs. She is suppose to wear them ALL the time except when sleeping. When we go back in July if there isn't enough improv. then she will have to undergo major surgery on her little legs. We are really hoping we won't have to go "there."

She is doing pretty well so far. I have configured a prize box if she wears her braces all day. I couldn't leave Caden out of course. He gets prizes too if he encourages Leilla when she wears then.

We are pretty bummed that our "normal" has once again been disrupted but am trying to remain positive knowing this could prevent a horrific surgery. The logistics of everyday life gets complicated to say the least since she is unable to bend her knees in these braces. Going to the grocery store( she cant sit in the front part of the cart), going in the car ( have to move the driver's side seat back so she can rest her legs on the shoulders of the seat), she can't ride her bike, have to unstrap the brace to go potty, and the list can go on........

On a positive note I have some cutie pics of us from Huntington beach two weeks ago :)

SAND ANGEL

CADEN BOOGIE BOARDING

BUNS ARE OUT

CUTIES SUNBATHING

6month Cardiology Appt.

Leilla went in for her six month cardiology appointment this afternoon and he said GOOD things!!Last appointment in Dec. Dr Ahdoot said that she potentially would need to have open heart surgery this summer to take out her "plug" because it is tooooooooo close to her aortic valve. The Amplatzer (plug) is still close to the valve but continues to not create any problems for her. YEAH! Every time we go in and she is symptom free is a little step farther from her ever needing more intervention :).

Another improvement is that the plug is now officially closed. NO more regurgitation. This also means less symptoms such as out of breathe and tired.

Dr Ahdoot confirmed Scott and I's decision for this particular surgery by reminding us what little Leilla avoided by bypassing (no pun intended) the conventional way. No Scar, No 6 month recovery, and no long hosp stay! Praise the LORD.

He called us Professional Parents , which is quite humorous in the sense of all the things and lessons learned from Leilla's precious life.

She is very complex with her many medical issues but I am daily reminded of God's gifts when I look and her and Caden. She is now dealing with an eye/neurological issue that is somewhat unfamiliar to us. She will be going back to the optometrist and getting a neuro. consult and MRI in the following weeks.

As for her leg issues she is not allowing me to put her braces on at this point. We are going back to the orthopedist as well in the next few weeks. I am pretty much Stuck as for her next step with the braces. I am searching for help but for some reason have hit a brick wall.

Thank you for continuing to lift up of family in our journey and struggles in the medical world. I also want to thank my dear friends for supporting us and praying for us for this particular appt.

Much love,

Grover Family :)

Spring is almost here

We have been keeping busy with various activities the last month. We just got back from a trip to AZ for a few days. While we were there we caught a Dodger spring training game. The kids love running around while watching the game.

As we get ready for Easter we also took a trip the the Jewish Children's Museum in downtown Los Angeles. The kids had a great time while also learning about some cultural things.

Our original reason for being down there was to get Leilla's leg braces fixed. Annoyingly the place they make and fix them is in Beverly Hills. She has been wearing them so hard that she broke a couple of the straps. I guess that is a good thing:) Her legs are looking a lot straighter so we are really hoping that at the 6month mark (May/June) she may not have to wear them anymore.

Today we are going to Kidspace to adopt our annual catapillar. We make it a little house out of a shoe box and watch as it goes into a cocoon. When it hatches then we release it outside. Caden loves watching the process.

Thats all for now,

Grover Fam

Our Journey with CHD at OneTrueMedia.com

Make photo slide shows at www.OneTrueMedia.com

We had a "Tubie" Party!!

We went to Children' GI yesterday for a 6 month appointment! Leilla has been seeing a Gastroenterologists since she was 2 months old. She had severe chronic reflux issues that were managed with medication as well as she was/ has been failure to thrive. All of these factors put together resulted in the g-tube placement 2 years ago in March. Throughout the last few years she has been on a feeding pump (call a kangaroo) , which constantly fed her throughout the night. Leilla got cellulitis when the gtube was placed, adding another 2 week stent at Huntington Hospital.She has had Occupational Therapy as well as Feeding Therapy, and a nutritionist to help her along. She had to learn to eat, chew, swallow, and suck a bottle. At one point she was getting all of her nutrition through her feeding tube and all the supplies that accompany it.

We kept a very detailed excel spreadsheet documenting how much was going in and how much she vomited, in order to calculate the caloric intake she was actually getting. A lot of the "things" that she has gone through I have already forgotten, which is probably just my coping mechanism.

After two years of time intensive work Leilla finally got her "tubie" removed!!! In anticipation of this we told her we would have a celebration party. After the removal she picked out cupcakes and we celebrated another huge step in her recovery :) Of course its very sentimental to us, so we kept the tube. Kinda weird , maybe? But it signifies just one more time all that we/ she has overcome.

The prayers and words of encouragement have really helped us throughout this journey. We wouldn't be where we are today without the loving friendships and most importantly His strength.

I hope these don't come across as "dramatic" but it really helps sometimes to literally look back and see what we have been through and come out the other side. People who know us and/or Leilla now have no idea the glory of God unless we tell our story. These are from when she had an NG tube (which goes thru her nose, left pic.) and her gtube placement two years ago. From then to now...... She is now sleeping in her own big girl bed....with NO TUBES!!

Above this post is also a video I had made two years ago when Leilla was fighting for her life. It still is very relevant as the week of Valentines is the annual Congenital Heart Defect Awareness Week.

Much love to our readers :)

Scott, Jaimie, Caden, and Leilla

Our Journey with CHD at OneTrueMedia.com

I have converted from our https://www.carepages.com/carepages/LeillaGrover to an actual blog to update my friends and family about the "happenings" of our very active lives. I created this blog (sigh) right after my sweet daughter was born to share pictures and memories of our two children. However six weeks after she was born we honestly let if fall to the waste side and had to start a carepage. We will still use carepages when major things occur like surgeries and procedures but for now I will try to have this be our internet home.

Jumping right in....

Caden had his acting debut at his preschool as Joseph in their Christmas play (pics still to come .) He was so adorable. He had no stage fright and stood up their like such a mature four year old :) Leilla of course was cheering in the audience so proud of her big brother.I'll post pics once I get them. Caden also has been keeping busy with Judo class once a week and preschool three times a week. He is such a joy and a big helper with little sister.

We had no real events with the Leilla girl all summer and into the fall, but here comes the winter and this is always a hard time for us. It started with a couple illnesses to which she lost some weight. For her every ounce/lb is Very important and it is taking a long time for her to regain where she once was. To add to that she is not getting the Synagist (RSV shot ) this year due to the amazing budget cuts of California. She should be getting it due to her conditions but they are cutting back to children under two this year. Annoying!!

She had a cardiology appointment a couple of weeks ago that left Scott and I confused as to whether it was good or bad. Her valves are leaking again which causes several other problems as consequences. Dr A is estimating that she will need to have the

Amplatzer device ( http://www.amplatzer.com/products/asd_devices/tabid/179/default.aspx) removed and then have the vsd closed in open heart surgery by this summer. These things take time to worsen (like a couple months ) so we are just waiting to see what will be the best way to approach this new chapter for her. In the back of our minds, we are not sure how we can bare getting close to losing her (again). I know I know..... that is worse case but..... this time she is much older and we actually have to explain things to her and watch her in fear.

Onto the next, she was diagnosed with Blounts Disease and has finally received her leg braces, called KAFO's (Knee, Ankle, Foot Orthotics.) These are HIDEOUS, but necessary. They don't let her bend her knee and therefore pose several problems. I tried to see if she could just sleep in them but they are only useful if they are weight bearing. Sooo, we are beginning to ease her into wearing them a couple of hours a day eventually getting up to all day. It breaks my heart to see her struggle like this but do you think it bothers her? Not little Leilla she just smiles and gives it all she has like, what's the big deal? This will hopefully avoid surgery in the next year. We are praying this will amount to one less surgery and better walking and less falling.

I had a couple genius as I would like to call them ways of trying to get her to wear them. Today we watched Yo Gabba Gabba as we do everyday but had her wear her braces. The show has lots of dancing and singing so she always like to stand and mimic what they are doing on tv. She actually watched the show began to walk and move a little around the room which is way more than she would do last week. The braces aren't effective unless they are weight bearing so just sitting with them isnt doing any good.

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Scott's still busy as ever finishing his PHD . He is a clerk at the Paton State Hospital here in So. California. He is really enjoying being challenged by the this field of forensic psychology. (he is 1/2 done with his fourth year with two more to go , dissertation and internship )We are so proud of all that he does and sacrifices for our family. He was here this morning to support Leilla as we begin this new well...chapter in our lives.

As I come to end, thanks for checking in on us! We can never have enough encouragement, prayers, and love. I hope to update weekly,

Much love, Jaimie G