Just be her Mom? 

Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant special health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and spasticity, her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love. 

When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. There are no vacations or holidays. Even on those days, you, mom-caregiver are always “on the clock”. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits. 

Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

 Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

COVID-19– Fears of navigating a post mask mandate era and re-openings with a child with a complex medical history.

 

This past year of living through a global pandemic has been difficult for many people in many ways.  Not having the usual contact and personal intimate interactions with others can become very lonely over time.  We are human beings and the connections to other people are what keep us going, provides support when it is most needed and provides comfort.  When we are having a hard day, or when we have had a really good one, we instinctually want to gather with family and friends to share the news.  Gathering, is one of the things we have been repeatedly told NOT to do in the midst of the coronavirus pandemic.

 

Watching the news, hearing reports on the dangers of the virus and how it affects the lungs, I became immediately attuned to learning what I could about this COVID-19.  I needed to know what could be done to keep my daughter safe and healthy as well as myself.  My daughter, Kerstin spent weeks spread over months in and out of the Special Care and Pulmonary Units of Children’s Hospital of Alabama in the late Summer and Fall of 2019 then again in 2020 with respiratory illnesses.  During these stays, Kerstin required and was placed on High Flow Oxygen for several days at a time for each of the four separate stays.  I don’t want to spend days and nights inpatient watching my child be hooked up to numerous machines and needing that higher flow of oxygen anymore.  We just spent about a week of her on what they call an “at home regimen” and was told that if she continued to have low oxygen saturations, she would need to be seen at the hospital.  Thankfully she got through that and has not been on supplemental oxygen in 5 days now.

 

As we continue to traverse through the COVID pandemic and vaccines have rolled out and some have been halted for further research; the world seems to be completely done with everything “coronavirus”, “pandemic”, “virus”, “mask”, “social distance”, “physical distance” and “safer at home”.  Re-entering the world is not the same for everyone!  There is no going back to “normal” or “business as usual” for many people.  Like grief, going back into the world with a deadly virus still ravaging, mask mandates ending (ended here in Alabama) and, a low percentage of adults being vaccinated (again, AL), it will look and feel differently for everyone.  Some people are eager to go mask-less, some cannot be vaccinated for medical reason, some will not be vaccinated for whatever reason(s).  Whatever the reason, I will not judge them and would hope that my decisions to be vaccinated, to remain distant and masked are for the health and safety Kerstin and other people considered “vulnerable”.

 

As we continue to push through to the other side of this virus, please continue to listen to sincere and trusted medical professionals, respect the personal spaces of others, wash your hands and wear your mask.  We will! 

Kerstin, wearing her mask!

 

“You really can change the world if you care enough.” –Marian Wright Edelman

 

Breathing!

It has been a long time, a long time.  I become a contributor with and have had a couple of articles be shared by The Mighty on platforms like Yahoo! Lifestyle. My published works  "When Children Ask What's 'Wrong' With My Daughter Who Has Cerebral Palsy" and "How Back to School Is Different for Families of Kids With Disabilities" have been widely shared.  Kerstin and I were featured on the cover of Montgomery Parents (Now River Region Parents) magazine where I was interviewed for the monthly Mom-To-Mom article.  The photo shoot we had for the magazine cover blew my daughter's mind.  She was a diva for days following.  Then at the Special Needs Expo hosted by the magazine, Kerstin got the "royal treatment" and "celebrity status".  Really big 'diva-tude'!

Hot off the presses!  Kerstin's a cover girl...so is her momma

  

It has not been all smooth sailing.  As I am writing now, I am thinking about an appointment I skipped out on for Kerstin today because of exhaustion; physically, emotionally, and mentally.  It is not easy or cheap to take that 2-hour trip several times per month to various appointments at Children's.  This would be the third appointment since she was discharged on October 1st.  Discharged?  Yes! Now, let’s go back to the last full week of September, the week following the Expo hosted by Montgomery Parents Magazine.

Expo day!  Turns out the weather was not too hot; Kerstin was in a good mood; heading to work with mommy and gain some praises for being the celebrity cover girl.  Things went well.  Kerstin even managed to get a Target run in that beautiful Saturday.  I made a few connections through my work, got to meet many families like our own; those raising a child or youth with a special health care need.  She had just completed a round of a steroid burst 5 days prior and seemed to have been feeling better.  The weekend was almost over and late that Sunday night Kerstin was not feeling well again.  

At work with her momma

Cover girl and Aunt Audrey

Cover girl with Guardian Angel Carol

I am still giving Kerstin her breathing treatments; I mean I am taking her puffs with her wherever she goes.  I made sure to follow the schedule with the bursts she had just completed and continuing to follow her daily medicine regimen.  Why was she not feeling well again?  By Wednesday, Kerstin was not feeling well at all!  It was scary.  I sent my sisters a message letting them know that she was not feeling well at all.  My youngest sister Joan is a nurse and immediately she asked me to relay to her what was going on, asking how Kerstin looked.  She commanded that I get a video of Kerstin to her ASAP.  She called after getting the video saying call her doctors but take her to an ED (emergency department) right then!  She asked what location I was going to and that she was coming as soon as she got her kids from school.  Another sister, Regina, left work early and said she was going to ride with us.   

In this video, Kerstin had nasal flaring, and her chest was caving with each breath.  We got to the ED and in no time they had her in back, IV started, labs cultures and so all going and even ordered an X-ray.  Shortly after, the doctor came in to tell me that she was going to have to admit Kerstin because she had pneumonia.    When I tell you all that it seemed like so much was coming at me all at once.  yet, the staff at this ED was so patient and caring.  The doctor asked if I wanted Kerstin to be transferred to Children's since her doctor and all specialists were in one location.  I said yes, it made since to her and to me.  However, since we were at a smaller ED, they would have to transport her since the IV was in and she was a difficult stick.  It felt like the earth had just disappeared from beneath me. Transport her? How?

Kerstin had never been in an ambulance!  Her personal vehicles have always transported her when needed.  This could not happen with an IV in her and fluids going. This warm Wednesday night was a night of firsts.  Kerstin was in the back of an ambulance with an attending medic with me up front with the other medic on our way to Children's ED.  We get there and things move fast again; more labs, more breathing treatments a clearer X-ray.  They told us that Kerstin would be going to the Pulmonary Unit on the 10th floor.  Though, the respiratory therapist was in the room and seemed to never leave when he did, he came back with one of the doctors.  They said it would take a little while longer for her room to be prepped in Special Care!  Another first, she has never been in the Special Care Unit, she spent one night and full day in the PICU after her spinal fusion back in 2013.  

The respiratory therapist working with Kerstin was an older gentleman, he was calm in his work and explanation of Special Care.  He told me that they would need to start Kerstin on a high flow cannula.  What is that?  Another first! Kerstin's O2 levels were barely in the 80s, and she also had high heart rates.  She was struggling to breath but, she was literally giving it her all.  With the high flow oxygen started, doctors and nurses continued cycling in getting forms completed, medicines entered and all prep for a hospital stay. 

Very first time getting IPV

After we got up to the Special Care Unit, it was busy all over again.  This time the room was full when she arrived.  Nurses were in there with a bed scale, they had towels, gowns, pillows and linens in place; it was real.  We were going to be here for a while.  A new respiratory therapist was there informing me that Kerstin would be getting breathing treatments and CPT every three hours!  The breathing treatments would alternate between her getting them through the high flow or this new way...IPV.  Another moment of, "I can't believe that Kerstin is being hooked up to all of these different machines."  The blue hoses took my mind back to the only other time I had seen them on anyone, my mom right before she passed away in 2015.  At that time, she was the only person I had ever seen in person, intubated and with the now familiar tubing and hoses.  This time, my daughter had them, not intubated but a different form of oxygen and a new ventilation therapy.  This was very hard to ascertain.

What is High flow cannula oxygen?:  High flow nasal cannula (HFNC) is a relatively new non-invasive ventilation therapy that seems to be well tolerated in children…Until more evidence from randomized studies is available, HFNC may be used as a supplementary form of respiratory support in children, but with a critical approach regarding effect and safety, particularly when operated outside of a [pediatric] intensive care unit (2016, NCBI).

What is Intrapulmonary Percussive Ventilator (IPV)? The intrapulmonary percussive ventilator (IPV) is a pneumatic positive pressure device used to move mucus.

The IPV sends small, fast bursts of air that open the airways. These small bursts of air also loosen and free mucus from airway walls. A continuous mist helps make mucus less sticky. The high flow rate encourages deep breathing, which helps air to get around and behind trapped mucus (2019, Cincinnati Children's).

After being settled into the Special Care Unit on this first night, every three hours of respiratory therapists began.  The first round of IPV was difficult to watch and Kerstin did not like it at all.  The bursts of air being forced into her lungs was unusual.  Seeing this process really highlighted the fact that Kerstin was indeed very ill and having a hard time simply breathing! Her lungs already restricted from the curve of her scoliosis curve were now significantly causing her to be uncomfortable and not breathing well.  Kerstin would go on to spend 3 days in Special Care getting these treatments every 3 hours then eventually every 4 and even come off oxygen right before being able to move to the Pulmonary Unit.  

 

Kerstin sitting up; having a good day in Special Care.  Right before the not so good first night in Pulmonary. 

The first night in Pulmonary did not go so well, she had been doing so good and then suddenly her O2 was low again and she even had to go back on oxygen but only for a short time.  After a few days off oxygen Missy was able to come home.  Her doctor said to continue her breathing treatments every 4 hours for the next couple of days and then go to as needed.   It had been several days before I had enough nerves to stop the regimen. When I did, Kerstin was not ready so, it was back to every 4 hours.

Just a few days later we would be back going to Children's for her follow up with her general medicine and pulmonary doctors.  Pulling into the parking garage, Kerstin's mood instantly changed, I tried to be reassuring to my love that she was there for 2 appointments and that she would be going home afterwards.  We get in to the first one and during the check of her vitals she is spiking a temperature but O2 and heart rate numbers were good.  She also had some rattling sounds.  Not again!  The doctor we were seeing first mentioned being glad that she would be going to pulmonary afterwards.  

No idea we would hear she still wasn't at her best. 

We traverse the campus a couple blocks to the next building and get checked in with the pulmonologist. They check her vitals again, and I kid you not, an hour in between the first stop and now, Kerstin's temp has continued to climb.  We get in her exam room and the nurse comes with a concerned looked on her face and begins her questions and examination which includes another temp check.  They are wanting to give her Tylenol or Motrin whichever I preferred first. In no time, her doctor is in to examine and listen to her.  He looks concerned!  I feel like I want to cry right at that moment; I know the looks.  He tells me that he wants to get some more X-rays because he was a little concerned with the temp and the diminished lung sounds!

Up to x-rays and back.  I can hear the doctors and nurses in the workstation area just outside of Kerstin's room.  I remember telling my sister that they were talking about Kerstin.  I sent my other sisters a message saying that I thought she had pneumonia, again.  Doctor comes in and said that after comparing her images, she had only a serious respiratory illness during her hospital stay but now had secondary pneumonia.  He said that she did not look sick (she did not, my girl had been smiling, listening to music and watch tv & videos), but the temp and imagines suggested she needed more time to recover.  He said he would not admit her at that moment but if she seemed to feel any worse, her temp continued or anything, she needed to come back there and be admitted.  She was started on a steroid and other meds that we picked up from the in-house pharmacy.  

Smiling through it all. 

Two weeks later, Kerstin is still getting breathing treatments every 4 hours, still monitoring her temps because this past Sunday she kept spiking 100.7 and higher for several hours.  I also continue with the dreaded suction when she is "rattling" and needs to cough.  She has another follow up scheduled in a few days.  It is not clear when my girl will be getting her feeding tube changed; that was schedule for the week she was admitted but her doctor said no.  This procedure requires Kerstin to be under anesthesia; he said that would also cause slower breathing and he did not want that right now.  He suggested pushing it out to November.  Guess what November is already jammed with follow ups for the follow up, neuro-motor/physical medicine for the orthopedic suggested Botox, dentist appointment as well as neurology for Epilepsy follow up and VNS interrogation. 

So, when will the tube be changed?  When will we be disappearing in a movie theater with her blankets to enjoy something animated?  When will we be leaving home without an appointment on the calendar?  When will we be going to Target so my girl can get her a $5 tee and $7 leggings while her momma grabs some Starbucks and we roam the aisles looking for clearance whatnots while saying "hello" to all of her 'co-workers'?  We are overdue for fun!

I repeat, we are overdue for fun! It is late on a Saturday night as I’m putting finishing touches to this post and Kerstin has had her 10 p.m. breathing treatment, temp check but, as I check her put her pulse oximeter on her O2 is fluctuating well below her low of 90.  She is dipping down to 83 and 84.  There would be so much beeping in a hospital setting.  I just pray we can keep her healthy and not at Children’s of Alabama before her scheduled appointment!

It is Monday, midmorning, and I continue to put finishing touches on this post; decided to leave the previous paragraph in here to show our journey.  Instead of in my living room, I am now in the parent corner of Kerstin’s Special Care Unit room at Children’s of Alabama.  We are back, twice in a month.  Kerstin ha been place on a rather high liter level of oxygen with a little e step down this morning.  It has been a very busy few weeks and from Saturday night until this very moment, it has been busy.  There will be more updates later.  Look for them on Facebook and Instagram. 

More IPV

Trying to get a midmorning nap. 

More to come…

“What’s wrong with her?” “She’s sick.”

Raising a child with special health care needs comes with many challenges.  There are some really high highs and also some really low lows.  As parents we love our children and we see them go through so many changes as they grow and deal with the things that come with their varying diagnoses.  We want our children to enjoy life, be involved in their communities.  We want them to be able to do things with and like their peers.  You know, things like, going to the movies, shopping, out to eat, etc…  We don’t want them to be seen as wrong or sick!

I cannot count the times we have been having a good day, on outings, Target included and a child sees Kerstin in her wheelchair and they stare and will ask their parent(s), “What’s wrong with her?” “Why is she in that chair?”  Too many times I hear the parent whisper, “She’s sick.” NO!  And that is exactly what I have started to say without explanation.  When I overhear that answer, I just politely say “No.”  When a parent tells their child that there’s nothing wrong, and to speak, we usually spark a conversation.  They are receptive and seem to want their child to be as well.  It warms my heart, and I am sure the hearts of other parents of children with special needs as well, when parents of children without those needs are open and want to make sure their child speaks and understands diversity. 

Having a disability or special health care needs does not equate to sickness.  Cerebral Palsy is not a sickness, it is not contagious.  Epilepsy is not contagious.  Yes, our children get sick, so does everyone.   When a child/adult has a disability, it usually takes them longer to overcome general illnesses.  Using a wheelchair, wearing glasses, AFOs, neck supports and other assistance in NO WAY means the person is sick.  When Kerstin is sick, she definitely will not be in a restaurant, a movie theater or her beloved Target.  That is something we just do not do.  The only time she is outside of our home while sick is to go to the doctor or unfortunately when she is hospitalized.

So, when you see a family out enjoying their day just as you are and your child asks, “What’s wrong with her (him)?”  “Why is s(he) in that wheelchair?” Be sure to tell them, that nothing is wrong, she needs the chair to get around and go places, say “hi”! 

I Get it!

     This past Saturday, I was fortunate and blessed to be able to work at the local special needs expo.  I was able to leave Kerstin in the comforts of home with her aunt Regina watching her for the day.  So, not only was I working, I was able to get a little respite, much needed.  As always, when Kerstin is with her aunts, I check in to see how things are going with my little boss.

     Regina kept me abreast on what was going on throughout the day.  When the day was done, I called to chat with them and see if anything was needed.  During our conversation, Regina told me that being there all day with Kerstin showed her how busy a single day can be. This was not the first time she's spent the day with Kerstin somehow, she really felt the love of being Kerstin's full time caregiver.  She said it felt almost nonstop at times, by the time she prepped food, got the Kangaroo bag filled and pump ready then the medicines, it was time do something else.  Keep in mind, Kerstin's medicines are staggered throughout the day with her having to take some every four hours.  She said keeping Kerstin on schedule while doing laundry and other things, it felt like she would sit for a few minutes and have to go do something else.  

     "I get it, Mattisa!", to hear those words seemed exhilarating, because, someone took the load off me for a while and knew I needed it off!  I cannot explain to you how overwhelming it was to hear those words.  As parents of a child with extra care and needs, we often hear how special we are, how special our children are, and how it must be so hard.  Or, can you recall the looks of pity, "Aww, bless her/your heart!"? It is welcome relief when it is gotten.  It is understood.  

     We are in no way looking for pity, Kerstin is as bossy as they come! In fact, she was paid for having to be cared for and not the other way around.  How bossy is that?  I had never heard of the "babysitter" having to pay to provide a service! Kerstin, setting another trend.  

     Let a family member or friend know that you really get it.  "How can I help?" May not be answered because I rarely answer when it is asked of me, just know that understanding the flow of a single day and jumping in without disrupting that goes an extremely long way!  I'm thankful for the supportive circle around us, when things seem heavy, they load is quickly lightened. 


More to come...

Weight, what?!?

     The latter part of 2017 proved to be very busy for us.  In October, Kerstin had her g-tube changed to a gj-tube.  That was followed by a very unexpected stay in Children's Hospital.  However, since October and the continuous feedings she has been on a constant climb in pounds.  For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds.  She was healthy and her nutritionist was pleased with her progress.   

     Things were going well until they were not so good.  Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia.  All of that lead to a few illnesses and hospital stays last year.  For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately.  

     The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline.  well over 90+ pounds.  Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much.  So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. 

     We will see where these changes take us...

More water intake!  Drink up.

More to come...


It's happening so quickly!

Epidermal Nevus

     This year, has been going fairly well however, I have been really bad about updating things here.  I have been updating Kerstin's Instagram a lot more.  Be sure to following Growing With Kerstin there.  
     Now, I will take us back to August 2016, when I noticed this little spot behind Kerstin's left ear.  At first I was thinking maybe her earring had scratched her or the post had stuck her and I immediately started applying an antibiotic ointment to it.  It seemed to smooth out some but, later it came back and appeared bigger and no matter what I applied it seemed to keep growing.  All while growing, it become more irritating to Kerstin,  she did not want it touched in any way, not to have the area cleaned while bathing, not to mistakenly touch it while dressing or anything. 

continuing to grow

     In October of that year, Kerstin had an appointment with a dermatologist that I walked away from still unsettled and wanting more answers.  The appointment just did not seem thorough or complete.  There had been cultures (cultivation of microorganisms) done on this area only to come back negative for any types of fungi.  So, back in December of 2017 a new medical doctor was added to Kerstin's team and the center of her medical home, a female!  Yes, we were enthusiastic about it and she went right to work with us.  On a thorough exam of missy, she determined that she would refer her out to another dermatologist. 

     February 2018, Kerstin had a new appointment with dermatology and it was determined that a biopsy needed to be performed in ordered to know how to properly treat this spot, whatever it may be.  Scary thought of this in office procedure where a small plug of her skin would be cut so that it could be properly tested. We have to do things that are oftentimes scary in order to take care of our children.  The process included a numbing applicant, that would be in place for 30 to 45 minutes before the cut.  Then, post cut, we had to wait another 30 minutes to ensure that the bleeding had stopped before she could leave.  

The wait!  It is so hard to be patient and wait on the results of a skin growth on your child.  Then the call comes and the nurse says she is calling from dermatology with biopsy results.  Take a deep breath and listen, "epidermal nevus".  What?  A very irritating and itchy skin mole.  It may come back but she has been prescribed a skin topical and now she needs to bath with have her hair washed with products that contain ketoconazole as an ingredient.  Since February, that nevus has inflamed twice, the cream is applied and it goes away again.  Another step on this journey. 

More to come...

References:
Epidermal nevus.  NIH U.S. National Library of Medicine https://ghr.nlm.nih.gov/condition/epidermal-nevus

Reflections: An Interesting Year

     2017 has come to an end.  This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new.  We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys.  January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure.  Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. 

     I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days.  Thankfully, most of them have been in and out days.  However, in July and again in November, we did not.  The year was well, appointments were also going well.  Kerstin had a good year.  Then there was July, Kerstin got really sick with a summer cold that just would not seem to break.  She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia.  So, an antibiotic was started.  Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before.  He thought it would be best if he called her pulmonologist.  We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines.  We ended up there for a few days.

     Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist.  This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control.  Things moved quickly and at times it seemed to quickly for me;  the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube.  The procedure was scheduled and the tube was placed.  Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings.  

First visit with new team member. 

Checked in at IR

Post GJ placement

Hours later, all smiles and ready for the new journey.

     Sweet November...and what a story it has for us.  I am not fond of Novembers at Children's of Alabama.  Yet, this is where we found ourselves and the week before Thanksgiving.  Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly.  She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings.  After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case.  In fact, we would spend a week there.  More pneumonia, seizure activity as well as the stomach issues. 

Back at Children's

Resting after a very long day. 

Comfort aids

A mother's saving grace(s)

     In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better!  

Looking forward to what's to come.
What will happen if we don't give up?  Endless possibilities!

More to come in the New Year!