Prayer For My Sweet Charlotte - Still no answers

We are overwhelmed by the response in prayer for our little Charlotte. She did have her appointment with the Gastroenterologist last week, and I am afraid that news isn’t great.

Charlotte weighed in at 16lbs 7oz, which we thought was great, evidently it is not. The Gastroenterologist said that Charlotte “appears” perfectly healthy, all except when she takes into account her age, birth weight and current weight. Based on those three things alone, she has deemed Charlotte a “malnourished” child. I know, I know…you are all thinking, “but her developmental milestones are being met”. Well, we learned that it is highly possible for a child to reach or even exceed their developmental milestones even if they are nutrionally malnourished. This can be due to a food allergy, or a mal-absorption problem. Charlotte is being tested for both, possibly a gluten allergy, or some other genetic disorder that causes her body not to absorb the calories it requires to grow properly. This means that the sweat chloride test results for Cystic Fibrosis is inconclusive and the potential diagnosis is back on the table.

Charlotte had lots of blood work done this past Monday that will be sent to a special lab in California for testing. One of the tests is a genetic marker test for Celiac’s Disease. This would be where the gluten allergy comes into to play should it be a positive result. It would also be a fairly simple remedy of changing her diet (all of our diets). Charlotte is also being tested for Crohn’s Disease as well, which would explain all of the crying and the inability to gain weight.

Did I mention that Charlotte has cried a ridiculous amount since birth? She was initially labeled a “colic” baby, but in her case “colic” lasted the first 8-10 months of her life! Each time I brought our concerns up to the old pediatrician the answer I received was “all babies cry for no reason sometimes”. Then it was said that all the crying Charlotte was doing was a behavioral issue, that I should just simply “let her cry it out”. Charlotte has always had issues sleeping. She did not start sleeping more than 2 hours at a time until just recently. I am sure you all can imagine the enormous amount of stress that caused me because I was just as sleep deprived as Miss Charlotte. Yes, Charlotte is teething; however, Tylenol, Motrin, teething gel, and/or cold chewing items should help, and calm the crying. In Charlotte’s case she cries for hours on end at night, while kicking and screaming as though she is in excruciating pain. I have been told repeatedly to “let her cry it out”, or that she is just “behaving badly to get attention”. I cannot even describe how angry I become when I am offered this type of advice or opinion about my child. If you would like to know my opinion on the “cry it out” method, go here.

The issue of Cystic Fibrosis, sadly, is not off the table. Charlotte has been deemed a “malnourished child”, and in children who are malnourished the sweat test can show a false negative. If after the tests being run now come back normal, then we must revisit Cystic Fibrosis, which by all accounts would explain Charlotte’s inability to gain weight and all the crying fits could be from intestinal pain.

Another issue that was raised because of Charlotte’s extremely low weight is the issue of illness. Evidently this flu season is predicted to be a fairly nasty one, and we have been advised to basically quarantine ourselves from children who are in daycare or institutionalized schools (public and private). Charlotte cannot afford to get sick, and if she were to contract the flu it could possibly be fatal. She simply cannot afford to lose any weight at all. So, we are not taking the girls to the grocery store with us anymore and limiting the number of “outings” we have to public places. This also means that I am more of a germ-a-phobe than I was before and all who enter my home must take their shoes off (outside) and wash their hands prior to touching anything or anyone. If a person has a sniffle, or has been around adults or children who are or have recently been sick, sorry but they aren’t allowed at my house for now.

The issues we are having with Charlotte’s weight are not new ones. These are concerns that started when she was about 2 or 3 months old. The problem comes in when there is a lack of information to the parents, the lactation consultants and the doctor. One doctor told us that breastfeeding Charlotte was the problem. One lactation specialist freaked out on the phone and told me my child was going to die because I was breastfeeding her. When we would make our concerns known about all the crying, we were told that “all babies cry”, and to “let her cry it out, she will eventually give up and go to sleep.” When we would express concern about her weight, we were either told, “oh nothing’s wrong with her, she is cute as a button” or “stop breastfeeding and put her on formula because breastfeeding is harming her.” Can you see how totally irritated this could cause us to become? I am so thankful for the last lactation consultant I saw who referred us to our new pediatrician who took everything into account on behalf of Charlotte and said “this is enough, we must get to the bottom of this”. She did allow for 3 months to pass because prior to, Charlotte was gaining a pound a month. During her last well check-up Charlotte had only gained 4oz in 3 months, and this was cause for alarm. Then Charlotte got sick, and lost a pound, and that was cause for more alarm. So, here we are today, seeking to find out why are sweet baby can’t seem to gain weight.

We know that people mean well when they leave comments like “oh she is fine, just look at how happy she is”. The problem with this is that no one, other than Malachi and I, are around this child 24/7. To only see her for a few moments would cause one to believe she is perfectly healthy. However, when you take into account her birth weight of nearly 10lbs to her current weight of 16lbs at 13 months, and then realize that is only a 6lb increase in her first year of life, hopefully you see the bigger picture here and realize this is NOT normal. This is potentially very harmful to Charlotte’s growth and development.

I humbly ask for your prayers. In all things we are praying the Lord’s will and His grace to persevere on behalf of our sweet Charlotte. We know that God will provide all that we need to care for our little one, both her physical needs and spiritual needs. Please pray for more patience for me. Charlotte has begun to sleep longer at night, but my body seems to be dragging behind from the past 2 years of no sleep. This means that some days though I try very hard, I lose my patience over small things. Please pray that while we are focusing a lot of attention on Charlotte that we incorporate Sofia into that special time as well. Sofia has been such a blessing. Each night when we say our prayers, she kneels down in front of the couch and prays for Charlotte. “Lord God, pray for my sissy’s heart and her scratch”. She has been praying with us for Charlotte’s heart for a year now, and doesn’t understand that it is all healed, so she continues to pray…my sweet girl. She prays for Charlottes “scratch” in reference to the places where Charlotte has been stuck for blood work. It is really a blessing to Malachi and me to hear our 3 year old praying on behalf of her sister. What a wonderful thing to cultivate in our little ones, prayer on other’s behalf.

We thank each and every one of you who have been faithfully praying for our family and over our family through this time. It seems my Charlotte is a special child that the Lord would allow for all these things to happen to cause complete strangers to make supplication to Him on her behalf! It will definitely be a long 10 days waiting on the results of the blood work, but in all things we know that God is Sovereign and that He will provide all that we need to be equipped for this situation, so that HE gets all the glory.

Serving God and My Family,

Crystal <>< (SAHM)