my boys :)

Good morning from beautiful hot and sunny Arkansas.
       Life has been incredibly busy, Jacob continues to keep us on our toes, he is doing good with IVIG except for having line access issues, the last 2 months the IV team has had to be called to get his line started and after discussing this with his team last week it sounds like we will be seeing a surgeron in August to get a port scheduled. Last week Jacob underwent procedure #22 for a new set of PE tubes that should hopefully last 18 months instead of 6 months.  Jacob also is going to require major dental work in October he is having several cavaties filled, plus getting caps on some of his teeth and they are fixing his front teeth which are smaller than normal and are getting calcified, he is having all this done under sedation which is easier on him, they plan to most likely keep him overnight.  Jacob just had an EDG done in April which came out good except for some flaring down in his main tummy and so we added another med to help that.  Jacob also has some major bone density issues in multiple areas of his bones and so because we can't take him off of steroids for his lungs we have had to start another infusion which we started this past week. He continues to do well with his therapies.  We are also switching to a new pulmonolgist as our's has retired. We are excited about this change, he's very familiar with Jacob and his history.

Joe continues to keep me busy, he's almost potty trained and doing well with it. He loves hanging out with Jacob at his multiple medical appts.  We have also switched his pulmonologist to the same one that Jacob will see. It makes it easier on me for scheduling purposes.  Joe hasn't had any ear infections since last August which is amazing.

Bobby and I are doing well and keeping incredibly busy, we have added a new vehicle to our family and I absolutely love driving her to LR. It's an 2006 envoy denali and she is fully loaded.  We also have our amazing garden going and are already starting to get amazing fresh veggies.  We also have taken our boat out several times. We have gotten to spend some amazing time with my older sister and we plan to visit her in Florida this fall, we also got to see my Aunt who came here. 

Here's just a few pics for you guys to enjoy.

update on our crazy busy lives.

Good morning, life has been pretty incredibly busy.  I can't believe in  just a few short weeks that we will be celebrating Thanksgiving.

Exactly one year ago this month our lives changed forever. Jacob got diagnosed with "hypogammaglobulinemia" and "low to no antibody response" also known as CVID.  Since Jacob has both diagnoses he was doing weekly sub q IG (immunoglobuline) due to some recurrent issues we did our monthly call with his team 2 weeks ago and it was decided that it was best to take him off Sub q IG and switch him to IVIG.  Jacob had his first IVIG treatment this past Thursday and did pretty good except for a few things which his team is aware of. He continues to amaze me with his fight with this disease.

Joe is doing well since he got his new set of tubes and is such a good caring loving brother to Jacob. On Thursday when Jacob did his infusion he called and checked on him. He got his 4 year old shots and his flu shot just recently and did awesome with it.

Bob and I are doing good keeping busy, we have had our new roof exactly a month now and it is beautiful. We did get to go on a family vacation a few weeks ago and it was nice to get away from reality of having a medically complex child that requires 24 hour care.

This Thanksgiving we are hosting with our family and we are planning for the regulars to attend. We are so thankful for so many things. We are also planning on a great holiday season as my older sister and brother in law are coming home for Christmas we are super excited to see them,  The week after Thanksgiving we return to Arkansas Childrens for clinic including meeting with our pulmonary team, and the neurology team for Jacob to get botox and then doing his IVIG infusion in the hem/onc unit.

The boys

Good day! I can't believe it's been forever since I posted, a lot has gone on with our amazing family. I can't believe these boy turn 4 n a month.

Joe: has had 6 ear infections in 3 months and currently has one, he gets his 3rd set of PE tubes on Tuesday/ Otherwise Joe continues to do well

Jacob: continue to have issues and keeps me super busy. He now has two huge diagnosis one he has hypogammaglobulinemia it is an immune system disorder that falls under (Common variable immunodeficiency) (CVID) Jacob also has low to no antibody response so like you or I have a normal system Jacob has little to no system which is why when he's sick he lands us at ACH. Jacob does weekly IVIG and daily prophylaxis antibiotics. Since Jacob has CVID he often wears a mask when out in public and especially when we go around a big crowd. Jacob also started 3 months ago on botox for spaciticity for his cerebral palsy. Jacob rocking his weekly IVIG infusion.

Tomorrow we have several appts with our amazing team at ACH: first we start off in the dental clinic with both boys then Jacob will get his botox and then we end in pulmonology for both boys. Due to Jacob having CVID he will have to take a different abx prior to any/all dental care. We meet our amazing new pulmo doctor tomorrow we are very familiar with him and he has signed  off on things that Jacob needs.

Bob and I are doing well, we are in the process of hiring a contractor to put on our new roof. We keep busy with both of our jobs, the boys and our garden.

Update on our boys and family.

I first want  start off with Happy Thanksgiving, I can't believe its been since April that I wrote. Time has flown by. We have been super busy since April. We have had many medical trips to Little Rock our home away from home, we have had to change our pediatricians, we have also had to make some very hard decisions regarding Jacob's care.

 Joe is doing great and keeping me busy, He just turned 3 in August, he loves Peppa Pig. He just tested out of daycare so he has all next week and then he will be staying home with Jacob and I. He get's minor colds and has allergies but nothing like his brother Jacob get's. Joe is a happy, smart, toddler for the most part. He currently weighs about 34 lbs.

Jacob has had a very rough few months. He continues to battle respiratory illnesses. We have met with his team at Children's  several times. He had bi-lateral hernia repair and new tubes done in August. In October we spent 3 days at ACH and 1 day in the PICU. We are losing our amazing pulmonologist this coming week and I am very sad to see her go she has been nothing but amazing to our family. I made a promise to her before our PICU stay that I would keep in touch with her and I plan to do that via text messaging. We have also gained an amazing pedictrician for the boys. Although it is a drive an hour to be exact she is willing to do whatever we need to do for Jacob. In October after a meeting with Jacob's team we decided it was best to pull him out of therapies and daycare. We are now considered home bound with him and he get's nursing services and therapies all here in the comfort of our home. We also are meeting this coming week with Jacob's team. We are almost sure that Jacob has an immune deficiency of some sort,

Bobby and I are doing pretty good, we keep so busy with the boys. We celebrated our 5th wedding anniversary. We took a mini vacation trip as a family. That was our first vacation since we got married and our honey moon, We remodeled our beautiful kitchen, it's now our gathering place when we host get togethers and Thanksgiving and Easter. We love having family over,

update on the boys and life

Life has been so crazy busy that I haven't gotten a chance to update. We have been in Little Rock a ton lately. I have also been in constant contact with Jacob's medical team. This video that I am posting is what we call the ride. It is a vest airway clearance system. Jacob's lungs are pretty weak and so this vest system literally shakes the chest to help him cough or clear his secretions out. Jacob also has a new diagnosis of Bronchiomalacia it is softening of the airway. His left lung is definitely a lot weaker and more scarred than his right now. Jacob also a month ago today decided that he would give mommy and daddy a scare and went into respiratory distress. Thank goodness we know what to watch for in the days  prior and so we headed to ACH Er and he got IV fluids, along with several respiratory meds and got admitted for 4 days. We have an amazing pulmonologist that knows that I will call her when we have issues with him and so she had already talked to the attending and so it made it so much easier on us.  Jacob also just had his 7th surgery last week and we once again got admitted this time for precautionary reasons considering Jacob's history.
Joe is doing well. He loves playing with toys and loves going to daycare everyday. He has an ear infection  right now. He is definitely a big talker and says his ABC's.  Lately he is big in to tractor's. Everyday as we drive to school he says wanna see tractors mommy.
Bobby and I are doing well. We have been trying to keep busy. We have gone out on the boat several times and just finished remodeling our kitchen. In the next few weeks we plan to plant our garden and set up the boys water table and swing set.

Update on life.

Were do I start, I can't believe that Friday is Christmas and that the following week we will ring in 2016. 2015 has been crazy, the last month and half I feel like we have lived at ACH between both boys having tonsils and adenoids out and new PE tubes in their ears. Both boys had complications which lead us back to ACH after surgery.  Now that we got both of those done hopefully no more tonsillitis around our house. I guess the big news lately is we have the vest system.  With Jacobs lung disease the vest makes our lives easier. The vest blows up and shakes Jacobs chest so that his  don't get sticky. He loves it and often calls it the ride. We go back to our home away from home in 2 weeks from today.  Next week is crazy busy but in a good sense as one my best friends is getting married to the love of her life. I honestly will be shedding some tears that day as I stand next to her. I know she follows this blog. Sorry about not updating on here frequently Jacobs medical issues keep my incredibly busy. I know as of right now we have 2 trips to LR in January . I will try and post the next post in a few days and include the video of the vest.
Make sure that you hug your family a little tighter tonight as you never know what your life has in store.

Update on the boys

Wow, time flies when your having fun. Seriously I can't believe 2 years ago that my sweet precious strong handsome miracles were born. The last 2 years have been crazy busy with so many ups and downs. God has blessed us being their parent's. I can't wait to see what this year has in store. As of right now we have one big surgical procedure planned for Jacob that is October 6th, Jacob recently almost 2 months ago got diagnosed with EOE (Eosinophilic Esophagitis) it is Eosinophilic (ee-uh-sin-uh-fil-ik) esophagitis (EoE) is a recently recognized allergic/immune condition. A person with EoE will have inflammation or swelling of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. Jacob is allergic to soy, dairy, and beef. So we are constantly having to watch everything he takes in by mouth. Along with EoE he has had strep throat 5 times this year and so while he is under for his EDG with biopsies they are doing a T&A along with replacing his PE tubes that are full of granulation tissue. Jacob's throat from the EoE is pretty  bad. Jacob also just qualified for a portable suction machine that will make our lives a tad bit easier. Jacob requires a lot of suction due to his chronic lung disease, the cerebal palsy, and the EoE. Both boys are in daycare full time and they love it, they both go to a special daycare that is for kids with medical or developmental issues and you have to qualify to go to this daycare. It has been a blessing and they are like family. The month of September is already plenty busy tomorrow the boys and I are going on a daytrip with one of my best friends to go hiking for the day. Next weekend is DH's family reunion, the 19th is our only free weekend in September and then the 26th is DH's company picnic and then we are just relaxing at home the weekend of the 3rd of October as Jacob has his surgery on the 6th and we be inpatient probably 2 nights. The 24th of September we see Jacob's amazing GI Dr Prince just for a follow up since we have had to change some med doses around. We are constantly busy or on the road. Tomorrow I can't wait to get away for the day of course we have to pack all of Jacob's medical supplies. Hope that everyone is doing well.