Allergies and Eating My Words...

I used to laugh at all those paranoid moms. Those moms who had kids allergic to everything, the hovering mom who never let their kid out of sight.Then I became one.

It all started out simple enough. Colic, reflux, and some minor breathing issues. But then we had hours and hours of crying from about 6 weeks on. 5-6 ER visits before he was a year old. Specialists from the Children's hospital...


Because Bubbie was a foster child, I first had to take him to the clinic rather then my pediatrician.
The clinic did not hear my concerns. Thankfully I had a nurse friend who was able to walk me through the medical protocol. With her assistance and some amazing caseworkers who pushed hard we were finally able to get an appointment  with a pulmonary specialist at the closest Children's hospital. I was not allowed to go to the hospital of my preference because it would be to far for the biological parents.

However, before our appointment, we had another ER visit with breathing problems. The amazing ER Dr wrote a referral for GI and a pediatrician  for us. He also gave us a Dx of reflux. The ER Dr's referrals were an answer to prayer as it finally allowed us to see the additional specialists we needed.


So now we were at the 6 months mark with a foster baby who cried for hours, slept no more then 2 hours at a time,  needed special formula and had the dx of asthma (clinic had told us not possible to dx an infant). He also was on meds for reflux, and had possible FPIES.

I was on the fast track to learning about asthma and food intolerance. I joined several  fb support groups and picked the brains of my friends who had kids with similar problems.

The specialists were not exactly helpful, very little testing was done. Everyone was happy to let me just handle it. I had no clue what I was doing. This was a foster child, I was accountable to not only my agency but a rather unforgiving CYS caseworker. I worried that I would miss something important with this Bubbie's health.

 I spend many, many nights rocking a crying baby for hours, quite often my tears joined his. During this time I was extremely grateful for several close friends, one who was a nurse with kids who had similar food issues offered valuable advice, the other a friend who had a husband with severe asthma who also had excellent advice,two other friends always willing to drop everything and come help when I felt overwhelmed.

The winter cold that was minor issues for other kids turned into pneumonia, 3 times for my little one. . I was giving breathing treatments around the clock. I was constantly monitoring breathing issues, watching for the signs that I should go to the ER. I was thankful for a neighbor friend who would come in the middle of the night to stay with the other kids.



He even had a ride in an ambulance before he was 2.

We learned some little tricks. Things like warm steam baths with eucalyptus oil and chest PT to loosen the mucus. We found a vapor rub that kept his oxygen levels up. Each ER visit added to our knowledge. Friends recommended meds that worked for their kids. Soon we had quite the variety of meds, all prescribed by different Drs. It was confusing and concerning to me.



Finally as we were further along in the fostercare side of things, I got permission to seek a second opinion at a larger Children's Hospital. We were able to get in to see GI. It was a long day in a large city. The caseworker accompanied me to the long first appointment. We were given hope. The FPIES diagnoses was thrown out. Fructose Malabsorption and Lactose Intolerance were the new diagnoses after some awful tests!

I found that having my child seen by the specialists during his sick times really helped us. Because Bubbie is a chubby, cute, out going little guy no one really believed me that he had the issues he did.

The answer to a prayer with our allergist came after a long hard night. I debated several times if I should just go to the ER before morning. But I knew having the Dr see his breathing would help more then yet another trip to the ER. This Dr (whom I LOVE!) listened to my sick little boy. She gave me a referral for a Pulmonary Specialist and an ENT. She also gave us a prescription for a very large dose of the much hated steroids. For the first time I felt like someone heard me and understood why I freak out. She saw the labored breathing etc...


This Dr has been a great help. She really helped me figure out what Bubbie is allergic to. She gave me an Epi pen, an allergy emergency plan and an asthma plan. She communicates with GI and nutrition to help us connect the dots between his breathing issues and his eating issues. She went over all his meds. She listened to me on what works and what doesn't. She explained why things worked the way they do. She helped me find the best solutions for his allergy/asthma issues.

Finally at almost 2 years old we have an allergy and asthma plan that works. We still have flare ups. We still  have long sleepless nights. But I am confident in my tools. I know that I have a good team just a phone call away. I can check oxygen levels and listen to his lungs at home, I know the danger signs.

My next step is to find answers for the food issues. Watch for a post on that....

                                                   

Old McDonald Had a Farm..

I have decided to take some time to just regroup and recover. This past 3 months of paperwork and stress, in addition to the LONG winter gave me a bit burn out. I needed to recharge and rest.


So since the adoption, we have been relaxing. We are maintaining a strong school schedule, while doing a little bit of outside clean up, which is theraputic for me. I love diddling around outside.


We had to babysit yesterday but not the rest of the week. I am thankful for this break. I took a long nap while Bubbie napped today. Ahhh, it has been a long time since I did that. Unfortunately, my big kids took advantage of that time to get into some scraps. After a firm scolding on being trustworthy without direct supervision, they decided to try to earn that lost trust back by mowing for me!

I had a phone IEP, because at scheduling time, I had thought I would be babysitting today. Nesiah is doing well. Exceptionally well. We are so happy with her progress.

The kids have been enjoying the outside. I bought a bag of tennis balls, which have been put to good use the past week. The kids also bike every day. We live on the side of a hill. I can see for miles and miles. But best of all with the intersecting roads, the kids can ride for a good, hilly (very low traffic) mile, all within view of my kitchen windows.

We have planted our garden and sprayed weeds. Flower beds were cleaned out, all in the last week or so. It is so therapeutic for me.


We are also working on some animal projects. I actually have time and energy to get out to the barn and do extra work. The kids always do great at taking care of their animals. But I try to get out and check to make sure things are they should be. My kids are incredibly responsible with their animal care.

We currently have 18 chickens/roosters that Elizabeth takes care of.  We have 4 sheep, a steer and a pony that David takes care of.  We also baby goat and a golden retriever that Lee cares for. The girls also have a Bichon that they care for. Fayth had been responsible for the baby goat but lost her right to take care of her. Bubbie loves all the animals but especially the chickens and the baby. He insists on going to the barn every single day with the kids.


They love when I come  outside and we play with all the animals. I rarely have time or energy lately for fun stuff like this. Today was the perfect.

It is not all fun and games on our farm. Animal care can be hard. Animal care can be disgusting. But it is sooo valuable for our kids.

Our steer has not been gaining well and on Sunday was really sick. I did some research and thought I knew what was wrong. I prayed for wisdom and decided not to call the vet. But Ben get getting sicker and sicker... we were afraid he would die. So we prayed. We gathered together and prayed that God would heal our sick steer. He did. Ben was still off, but not looking like he was on his deathbed by Monday morning. I was able to stop by the farm store where an old timer gave me some tips on how to manage his care. He is well on the way to recovery now! We praise God for caring about steers and healing him!!


Yes, I know it makes us strange that we pray for steers. But we believe that God cares about every detail of our lives. He cares about helping single moms feed their kids. He does still work miracles. We attended a really good mission conference at a local church recently. It was so inspiring and encouraging. Here were people who did crazier things then us. They saw God work in ways we can only imagine. My kids sat spell bound for 2 hours, as the speakers shared stories! It has often been discussed since that. How God works... How He cares.... why He calls us to be crazy.. why He cares about every aspect of our lives.


We have an entire week ahead of us with no babysitting, no real responsibilities other then really working towards the goal of finishing school strong! I plan to do some cleaning, some animal care, some training with the kids.


What do you have planned for the summer?

He is adopted!

Some day I will blog our story. This story has God's fingerprints all over it. All over it. It was a long hard journey, but Moses is now adopted.



I got the phone call and 24 hours later I had an emergency kinship license and a 6 lb baby boy...

He was such a tiny peanut. 

We were so blessed that God gave us yet another April adoption date. It is almost to crazy to be true! 

We were blessed by everyone that came out to support us!